Summary

Reader Advisory: This report contains graphic descriptions of traumatic experiences, often affecting children.

Intersex people in the United States are subjected to medical practices that can inflict irreversible physical and psychological harm on them starting in infancy, harms that can last throughout their lives. Many of these procedures are done with the stated aim of making it easier for children to grow up “normal” and integrate more easily into society by helping them conform to a particular sex assignment. The results are often catastrophic, the supposed benefits are largely unproven, and there are generally no urgent health considerations at stake. Procedures that could be delayed until intersex children are old enough to decide whether they want them are instead performed on infants who then have to live with the consequences for a lifetime.

Doctors in the United States continue to perform medically unnecessary surgeries that can inflict permanent harm on intersex children. 

Intersex people are not rare, but they are widely misunderstood. Biology classes often oversimplify a fundamental reality. We are taught that sex is dimorphic: simply male or female. But sex, in reality, is a spectrum—with the majority of humans appearing to exist at one end or the other. In fact, as many as 1.7 percent of babies are different from what is typically called a boy or a girl. The chromosomes, gonads, internal or external genitalia in these children—intersex children—differ from social expectations. Around 1 in 2,000 babies is different enough that doctors may recommend surgical intervention to make the body appear more in line with those expectations.

Until the 1960s, when intersex children were born, the people around them—parents and doctors—made their best guess and assigned the child a sex. Parents then reared them per social gender norms. Sometimes the intersex people experienced harassment and discrimination as a result of their atypical traits but many lived well-adjusted lives as adults. During the 1960s, however, and based largely on the unproven recommendations of a single prominent psychologist, medical norms in the US changed dramatically. Doctors began recommending surgical solutions to the supposed “problem” of intersex traits.

In this report, based on interviews with intersex adults, parents of intersex children, and medical practitioners working with intersex people, interACT and Human Rights Watch document the fall-out from that medical paradigm, and the failure of the medical community to regulate itself effectively. As detailed below, there have been changes in practice in recent years, with many doctors now advising against surgery on infants and young children. But even so, surgery continues to be practiced on children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.

Some intersex traits—such as atypical external genitalia—are apparent at birth. Others—such as gonads or chromosomes that do not match the expectations of the assigned sex—manifest later in life, such as around puberty. Information about intersex traits can be overwhelming. Whether parents are alerted to their child’s intersex traits at birth, puberty, or another point in life, they can struggle with confusing information and advice.

Healthcare providers are an important source of information and comfort amidst such confusion. But in recent decades, many doctors have defaulted to advising early irreversible surgery on intersex children. These operations include clitoral reduction surgeries—procedures that reduce the size of the clitoris for cosmetic reasons. Such surgery carries the risk of pain, nerve damage, and scarring. Other operations include gonadectomies, or the removal of gonads, which result in the child being forced onto lifelong hormone replacement therapy.

This history of surgery was also a history of shame and stigmatization. In some cases, doctors instructed parents to conceal the diagnosis and treatment from the child, instilling feelings of shame in parents and children both. Many intersex people did not learn about their conditions until they accessed their medical files as adults—sometimes as late as in their 50s.

Finding Out the Truth

Ruth, now 60, spent much of her youth questioning the constant medical attention, including surgeries, she received in her early childhood in the 1960s. “Doctors always deflected my questions and stonewalled me when I asked why I had so many appointments,” she said. “I developed PTSD and dissociative states to protect myself while they treated me like a lab rat, semi-annually putting me in a room full of white-coated male doctors, some of whom took photos of me when I was naked.”

Ruth attended a private university, started a lucrative career, and got married to a man. Then, one night when she was 32, she hemorrhaged while having sex, so she rushed to the hospital. Ruth told Human Rights Watch: “After my vaginal repair surgery, I had my first encounter with a truly compassionate and candid doctor. He told me ‘I’m not sure what you have, but if I can see your medical records I can explain it to you.’”

Ruth drove to the office of the endocrinologist who had treated her throughout her childhood and requested her records. He said no, so she waited in the parking lot until he left that night, broke in, and stole them.

I just sat in the parking lot and didn’t even read them at first—I just put them in date order,” Ruth said. “Then I took a breath and started reading and the first thing I saw on the first page was ‘Male pseudo-hermaphrodite, complete female phenotype. Patient does not know Dx (diagnosis).’” Thoughts rushed through her head:

First, I thought: This is great! This is a known thing! How freaky does it make you feel when they say there’s no one else like you and no name for your condition? And the second thing was: these fucking bastards lied to me all the time, there are other people out there like me. I wish I had known there were others like me. I was totally enraged that that had been kept from me. Why would you deliberately try to make a person feel like a freak? And then I felt: This feels good. I’ve got the knowledge and they can’t hide it from me, I can protect myself now. And then I thought: I wonder how much mom knows. Did she know this and was part of a keep-it-from-Ruth thing?

Ruth confronted her endocrinologist the next day. He said her mother had asked him not to tell Ruth, and that he was “just following the standards of care.” Ruth said: “That was when I realized that this way I was treated was never about me—it was about my doctor and my parents and everyone feeling uncomfortable with how my body was…. But I want to be like nature made me.”

Over time and with support and pressure from advocates, some medical norms have evolved. Today, intersex children and their families often consult a team of specialists, and not just a surgeon. The medical community has evolved in its approach to intersex cases—which doctors often categorize as “Differences of Sex Development” or “DSD”—by establishing “DSD teams.” These teams convene multiple healthcare specialists, including mental health providers, to advise on and treat intersex patients. Disclosure of a child’s intersex traits to the child is widely recommended and commonly conducted. During this evolution in care, cosmetic surgeries on intersex children’s genitals have become highly controversial within the medical community.

Most medical practitioners now acknowledge that in some cases parents may prefer to leave their child’s body intact as a way of preserving the person’s health, sexual function, fertility options, autonomy, and dignity. Consensus among specialists in intersex health has evolved to acknowledge data gaps and controversies—namely that there has never been sufficient research to show either that these surgeries benefit patients or that there is any harm from growing up with atypical genitals. A growing number of doctors are opposed to doing unnecessary early surgery under such conditions. Practitioners also increasingly recognize the suffering of intersex patients who underwent the operations without their consent.

However, despite these promising developments in care for intersex people, the field remains fraught with uneven, inadequate, and piecemeal standards of care—and broad disagreements among practitioners over the human rights of their intersex patients. While there are certain surgical interventions on intersex children that are undisputedly medically necessary, some surgeons in the US continue to perform medically unnecessary, cosmetic surgeries on children, often before they are one year of age.

Some practitioners believe they or their colleagues are conducting surgeries on intersex children only in extreme cases. However, they often include socio-cultural factors in that analysis, including parents’ stated desire to give the child a chance to grow up “normal.” Such analysis indicates that the paradigm remains one of unreasonable haste to embrace a surgical “solution” to a social problem, without waiting until the wishes of the patient can be the deciding factor. It also sets up the false dichotomy of child autonomy versus giving the child a “normal” life—when there is no evidence that these surgeries deliver on that promise.

In a 2013 report, the United Nations special rapporteur on torture noted:

Children who are born with atypical sex characteristics are often subject to irreversible sex assignment, involuntary sterilization, involuntary genital normalizing surgery, performed without their informed consent, or that of their parents, ‘in an attempt to fix their sex,’ leaving them with permanent, irreversible infertility and causing severe mental suffering.

In July 2017, three former US Surgeons-General, wrote that they believed “there is insufficient evidence that growing up with atypical genitalia leads to psychosocial distress,” and “while there is little evidence that cosmetic infant genitoplasty is necessary to reduce psychological damage, evidence does show that the surgery itself can cause severe and irreversible physical harm and emotional distress.” They said: “These surgeries violate an individual’s right to personal autonomy over their own future.” The three doctors concluded:

[B]abies are being born who rely on adults to make decisions in their best interest, and this should mean one thing: When an individual is born with atypical genitalia that pose no physical risk, treatment should focus not on surgical intervention but on psychosocial and educational support for the family and child.

Some proponents of surgery claim that techniques have improved, and they express confidence in their ability to secure better outcomes; however, they admit, evidence to support that confidence is lacking. Some adults interviewed for this report who had undergone surgery talked about traumatizing results even from “nerve-sparing” surgeries.

Two common goals of these cosmetic “normalizing” surgeries on children’s genitals are to enable heterosexual penetrative intercourse, and to help the child conform to gender and sexual norms and expectations. For example, doctors cite the need for boys to be able to stand while urinating as a reason for conducting hypospadias surgery. Surgeries intended to make a body conform to rigid gender stereotypes before the individual can express their sexual orientation or gender identity greatly undermine the right to free expression as the child develops into an adult with a surgically-modified body intended to fit social norms and not the individual’s sense of self. These surgeries also undermine many intersex children’s rights to bodily integrity and health.

Assigning a sex of rearing to a child never requires surgery. Genital or gonadal surgeries on intersex children too young to declare their gender identity carry the risk of surgically assigning the wrong sex. Depending on the condition, this risk can be between as high as 40 percent—meaning that many children will grow up to reject the sex that has been irreversibly surgically assigned to them. This means that for conditions where it is not possible to predict gender identity outcomes with confidence, doctors are conducting sex assignment surgeries based on guesswork.

But assigning the wrong sex is not the only risk. Removal of gonads can end options for fertility and will lead to lifelong need for hormone therapy. The genital surgeries done on intersex children can result in loss of sexual sensation and ongoing pain. The procedures are irreversible, in that tissue or organs that are removed cannot be replaced, nerves that are severed cannot be regrown, and scar tissue can limit options for future surgery.

For intersex children, their experiences with treatment interventions—including surgeries and repeat examinations—can harm them for life. Pejorative or stigmatizing language from doctors, repeated genital examinations and photography, and exposure of their bodies to multiple practitioners can be traumatizing. The impact of their negative experiences receiving medical care extends beyond the physical outcomes or desires to be socially “normal.” Intersex people interviewed for this report described the feelings of dread and horror—decades after unwanted or damaging surgeries, genital exams, insensitive disclosure of diagnosis, and other experiences—when attempting to access healthcare. For some, this has led them to avoid healthcare as adults. 

As documented in this report, despite evolving standards of care, the establishment of multi-disciplinary “DSD teams,” distaste for discrimination, and an increasingly visible public debate over informed consent and medical necessity, many doctors continue to misinform parents of intersex children and pressure them into choosing unnecessary cosmetic surgeries on their children. Nearly every parent interviewed for this report said they were presented with medically unnecessary surgery as an urgent need at least once during their pursuit of care for their child.

Proud Parents

Jackie, a mother of a 6-year-old in California, told Human Rights Watch her pregnancy was uneventful, and she was excited to have a daughter join the family. “We started saying ‘she’ even before we got pregnant,” she said. The baby was born a month early and then immediately, Jackie remembers: “They cleared the room and said, ‘we need to talk to you.’ They said the doctor who did the initial exam felt what he thought were gonads and they wanted to put her in the NICU because she might not survive the night.”

The baby was taken to a regional intensive care unit by ambulance; Jackie and her husband joined a few hours later. “The endocrinologist we met there was very kind, had good bedside manner,” she said. “But immediately we started hearing stories from her about [a celebrity who is rumored to be intersex]. They asked if my husband and I were related. They said they needed to test whether our child had male or female chromosomes.” That same day, a urologist arrived to consult on the case. “He asked—and this was within hours of me having given birth—whether I had told anyone that we weren’t sure if our baby was a boy or a girl.” Jackie said yes, and that she had posted it on Facebook. “Then he shrugged and rolled his eyes and said, ‘Oh great, parents these days,’” Jackie said.

The doctors told Jackie and her husband that they needed to test the child for some conditions which could be life threatening, including one that could cause “salt wasting.” The tests could take up to a week, they were told, so they stayed nearby so they could see their child daily.
“They gave all the other babies ‘It’s a boy,’ or ‘It’s a girl’ tags on their little cribs, and our daughter had nothing,” Jackie said. “I talked to the social worker and demanded they give us that—I needed that. I was ok with it changing and I knew we were going to get more information, but I needed that.”

While they waited for test results, the urologist returned for several consultations. “Within a few days he was telling us he could do genital surgery on our kid,” Jackie said. “He would say things like ‘Well it’s easier to subtract than it is to add.’” One day he came to see the child with one of his interns. “They said they wanted to ‘take a look’ at my child,” Jackie said. “I said no. She wasn’t for their studies. He responded: ‘In that case, you may never see me again,’ so I told him goodbye.”

Medical settings can be intense for anyone. Pressure to conduct surgeries on children to make them conform to socially “typical” understandings of male and female bodies can be overwhelming. Incomplete or improper counseling can leave parents ill-equipped for the future in which their child’s body will develop differently from their peers. Parents of young intersex children interviewed for this report recounted how medical staff pressured them to undertake irreversible procedures, including surgery, and, they said, made them feel they were being unreasonable when they resisted or asked questions.

Some doctors cited surgical risk and outcome statistics that, when queried by parents, the practitioners could not substantiate with medical research literature. Other parents heard from doctors that the surgeries were “necessary” to avoid future bullying and humiliation—and, as noted above, to allow their boy children to stand to pee. Parents interviewed for this report talked about their isolation, confusion, and distress; their desire for information and support; and the comfort they found in meeting other parents of intersex children, and learning their child was healthy and would be able—with support—to live a happy and fulfilling life.

Parents interviewed for this report who elected cosmetic surgeries on their children expressed mixed views. Some said they felt they made the decision without complete information and under pressure from doctors to accept surgery urgently, with the strong implication—or in some cases explicit explanation—that surgery was required as part of making a sex assignment on their newborn. Others said they would have elected cosmetic surgery on their children’s genitals no matter what risk types or rates the surgeons had cited to them—they wanted their children to look “normal.”

Bullying and social stigma are real concerns that are bound to cause parents worry—but the surgeries do not actually remove the possibility of those harms, and the concerns, while valid, do not justify the far greater lifelong harms that irreversible surgeries often inflict upon intersex children. And those fears are by no means certain to materialize. We interviewed parents who rejected early surgery and said their children had not faced unusual amounts of bullying or harassment because of their intersex traits. The children were able to go to school, develop friendships, and access healthcare like other children. Parents often credited the peer support and information they received from parent support groups for making this possible. “The point parents have to understand is that where [they] think the problem is over—it’s not the end,” said an intersex woman in New York. “We have to deal with it for the rest of our lives—and [parents] shouldn’t be making decisions based on really early concerns because those are not the biggest problems.” 

For more than 50 years, the medical community in the United States has often defaulted to treating intersex children by conducting irreversible and unnecessary surgeries—and no clinic has firmly instituted a moratorium on such operations. Even after two decades of controversy and debate, there remains no research showing that early, medically unnecessary surgery is helpful to the intersex child. The evidence is overwhelming that these procedures carry great risk of catastrophic harm. And while increasing numbers of doctors believe it is wrong to conduct these procedures, recent medical journal articles and some data sets cited in this report demonstrate that many clinics continue to do so. International human rights bodies have recognized the practice as implicating and potentially violating a range of fundamental rights, including freedom from torture, the right to health, and autonomy and integrity.

While most of the practitioners interviewed for this report said they thought medically unnecessary surgeries were becoming less common, none said their clinic had stopped doing them altogether.

None of the healthcare practitioners interviewed for this report shared exact data about surgery rates during their interviews. However, the report documents the trends they observed in their clinics and in the field of treating intersex people more broadly. There was considerable disagreement and divergence among practitioners, which in part reflects conflicting and inadequate standards of care.

The lack of standards limiting the discretion of doctors to recommend and conduct medically unnecessary surgeries represents a failure of the government as well as medical governance bodies to live up to human rights standards.

At present, too many medical practitioners advise surgery or conduct surgeries on intersex infants and young children, citing lack of data on the outcomes for children who do not undergo surgery. Human Rights Watch and interACT believe that this approach has it exactly backwards: the experience of those who have undergone the surgery and principles of medical ethics suggest that unless and until there is outcome data establishing that the medical benefits of specific surgical procedures on infants and young children outweigh the potential harms, they should not be used.

Accordingly, Human Rights Watch and interACT are urging a moratorium on all surgical procedures that seek to alter the gonads, genitals, or internal sex organs of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.

Methodology

This report is the result of a partnership between interACT and Human Rights Watch. A Human Rights Watch researcher and a research consultant who is a practicing physician in California conducted the interviews cited in the report. The report is based on in-depth interviews with 30 intersex adults, 2 intersex children, 17 parents of intersex children, and 21 healthcare practitioners including gynecologists, endocrinologists, urologists, psychologists, and other mental health providers who work with intersex people. Human Rights Watch also interviewed eight people who reached out to us following a campaign run by a support group for people with Congenital Adrenal Hyperplasia (CAH) and parents of children with CAH. This group included six parents of children with CAH, and three individuals with CAH. These interviewees all expressed a desire to not be labeled, or to have their children categorized, as intersex. We include the data collected from those interviews in this report. As the discussion on terminology in the glossary of this report explains, we use “intersex” as an umbrella term that can sometimes include individuals with CAH. In all instances where interviewees expressed a desire to not be associated with the term intersex, we note the testimony accordingly.

Founded in 2006, interACT is an organization in the United States focused on advocating for the human rights of children born with intersex traits.  They do this by raising intersex visibility, empowering young intersex advocates, and promoting laws and policies that protect intersex children and youth.

All interviews were conducted in English. Most interviews were conducted in person, with some additional interviews taking place over the phone. Intersex people from California, New York, Massachusetts, Texas, Florida, Maryland, Illinois, Wisconsin, and New Jersey were interviewed. Parents of intersex children from California, Florida, Texas, Iowa, Wisconsin, Massachusetts, and New York were interviewed. Providers from seven states were interviewed; the locations have been redacted at their request for anonymity.

Interview participants were recruited through support group networks, online networking groups for intersex people, and formal outreach letters to clinicians from Human Rights Watch. At the conclusion of the interviews, all interviewees were informed that they could share Human Rights Watch’s contact information with other people they thought were relevant to the project. Some interviewees came to us that way.

Human Rights Watch wrote letters requesting interviews to 218 relevant health practitioners—either because they were publicly affiliated with a DSD team (a team of specialist healthcare providers who treat patients with intersex traits, or as they are sometimes called in medicine, differences of sex development—“DSD”), or because their name appeared on a published article about intersex medical care. Letters were sent by mail, and followed up by email (see Appendixes I and II). In some cases, Human Rights Watch called specific practitioners’ offices to follow up. We interviewed all practitioners who responded to our request; in addition, we interviewed some practitioners who came recommended by other practitioners we had interviewed. Two months after sending the initial letter, Human Rights Watch sent a follow-up letter by mail and email to all practitioners who had not responded to our original request for an interview (see Appendix II). We received several written responses declining to be interviewed. 195 practitioners contacted by Human Rights Watch never responded. All practitioners are identified in the report only by their specialty. All references to practitioners or researchers relevant to intersex medical care that are cited by name are derived from published articles and statements.

In both the initial letter and the follow-up letter to healthcare practitioners, Human Rights Watch explained that we sought a wide range of views. Understanding that providers would not be able to share patient contact information with us, we requested that providers invite their patients and networks to participate in our research. We specifically mentioned that we were eager to interview people who had undergone early surgical interventions and were pleased with the outcomes. Approximately half of the providers we interviewed said they would invite their patients to participate. We received one response based on this request.

All interviews contained a discussion and agreement on informed consent, and interviewees were informed of how the information they shared would be used in Human Rights Watch publications and advocacy.

At the outset of the project, the research design was reviewed by members of Human Rights Watch’s children’s rights division, health and human rights program, LGBT rights program, women’s rights division, disability rights division, and legal department; as well as interACT’s legal director and executive director. Mauro Cabral Grinspan, a member of the Human Rights Watch LGBT program advisory committee and executive director of GATE, reviewed the research plan. Dr. Susan Stred, MD, professor of pediatrics at SUNY-Upstate Medical School reviewed and commented on the report. The project met interACT’s programmatic standards.[1] The research team undertook the Physicians for Human Rights Ethical Review Board process in September 2016, before the research began.

All names of interviewees in the report, except where noted, are pseudonyms. In some cases, additional personal details have been altered or obscured to protect an individual’s privacy. During interviews with some intersex people, their medical records were reviewed for verification purposes. No medical advice was given during the interviews. Interviewees did not receive any compensation for participating in interviews, but were reimbursed for any transportation costs to and from the interview.

On February 23, 2017, as Human Rights Watch’s research for this report was ongoing, a support group for parents of children with Congenital Adrenal Hyperplasia (CAH), The CARES Foundation, launched a “Call To Action” that featured instructions to contact Human Rights Watch. The notification read: “Human Rights Watch is actively fighting parents' rights to make decisions regarding early surgical intervention comparing it to female genital mutilation, a horrendous practice by religious sects to disfigure and disable external genitalia. These entities have not asked how CAH patients and their families feel about these issues and they need to hear from you.”[2] At that time, Human Rights Watch had taken no public position on surgeries nor had we made a comparison to female genital mutilation. We had, contrary to the campaign’s claim, been in the process of interviewing people with CAH and parents of children with CAH.

As a result of this campaign, Human Rights Watch was contacted by 16 people with expressions of concern. We attempted to contact each of the people who called us, and arranged to interview those we were able to reach and schedule—eight people in total, including six parents of children with CAH and three adults with CAH. In those interviews, we followed the same methodology as we did with each of the other interviews, and explained that as this was Human Rights Watch’s first report dedicated to intersex issues, we had not taken a position on any related item. Some of these interviews are identified in the report as resulting from the calling campaign. Prior to this campaign, Human Rights Watch had interviewed parents of children with CAH and adults with CAH whom we had contacted through our other outreach methods. Similarly, we asked each interviewee how they would like themselves or their children identified in the report, and we have followed through accordingly.

On May 3, 2017, Human Rights Watch met with the leadership from CARES as well as Dr. Dix Poppas, chief of pediatric urology at Cornell-Weil Medical Center in New York City, and an affiliate of CARES. During the meeting, the two organizations exchanged information and views on a range of topics. Following that meeting, Human Rights Watch wrote to CARES and Dr. Poppas to clarify some outstanding questions so that we could accurately and fairly reflect their views. That correspondence can be found in Appendices 3 and 4 to this report. CARES responded on June 8. That correspondence can be found in Appendix V of this report. Dr. Poppas responded on June 21. That correspondence can be found in Appendix VI of this report.

Glossary

A note on terminology

In an effort to be inclusive, accurate, and efficient, this report uses “intersex” to describe people with anatomies that are considered “atypical” for either male or female bodies. Human Rights Watch and interACT recognize and respect that some people may feel alienated by this definition, some people may disagree with the definition, or some people may object to the use of labels to describe their identities, conditions, or experiences. During each interview, researchers asked interviewees to explain which terms they preferred and identified with. In cases where Human Rights Watch interviewed individuals who specifically rejected the label of “intersex” either for themselves or for their children, they are referred to by their preferred terminology in this report.

Throughout this report, we reference “medically unnecessary intersex surgeries.” By this we mean: All surgical procedures that seek to alter the gonads, genitals, or internal sex organs of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.

17-Beta hydroxysteroid dehydrogenase 3 (17-B-HSD3) deficiency

A condition caused by a change in the enzyme 17-Beta hydroxysteroid dehydrogenase 3, which is necessary to produce the male-typical amount of testosterone. Since testosterone has a critical role in male-typical development, 17-B-HSD3 deficiency affects the formation of the external sex organs before birth in children with XY chromosomes. (Children with XX chromosomes and 17-B-HSD3 deficiency seem to be unaffected.)  Those with 17-B-HSD3 deficiency and XY chromosomes have internal testes and are generally infertile, and most are born with external genitalia that appear typically female. In some cases, the external genitalia do not look typically male or clearly female. Still other affected infants have genitalia that appear predominantly male, often with a micropenis and/or hypospadias. Children with17-B-HSD3 deficiency and XY chromosomes are often raised as girls, but they will masculinize at puberty (unless natural hormone production is altered). About half of these individuals adopt a male gender role in adolescence or early adulthood. 

5 alpha reductase-3 deficiency (5 ARD)

A condition caused by a change in the enzyme 5-alpha reductase, which converts testosterone to dihydrotestosterone (DHT). Children with 5-ARD have XY chromosomes and internal testes, and many are born with external genitalia that appear typically female. In other cases, the external genitalia do not look typically male or female. Still other affected infants have genitalia that appear predominantly male, often with a micropenis and/or hypospadias. Individuals with 5-ARD will undergo a masculinizing puberty (unless natural hormone production is altered). In many cases, 5-ARD may not be identified until puberty, but individuals whose close relatives also have 5-ARD may be identified early and raised as boys all along.

Androgen

Hormones such as testosterone, dihydrotestosterone (DHT), and androstenedione that drive the development of male-typical sex characteristics.

Androgen Insensitivity Syndrome (AIS)

A difference in the androgen receptor causing an individual with XY chromosomes and internal testes to be completely or partially unable to respond to androgens (e.g., testosterone). Androgens produced by the internal testes are converted into estrogen by a process known as aromatization. An individual with complete AIS (CAIS) will develop typically female external genitalia and undergo a feminizing puberty, while partial AIS (PAIS) will result in external genitalia that can appear more typically female, more typically male, or somewhere between, and a range of typically masculine or typically feminine secondary sex characteristics may develop at puberty.

Androgenized/Virilized

The effects of the exposure of sensitive tissues to androgens, such as the development of typically male genitals and/or secondary sex characteristics.

Chordee

A curvature of the penis.

Clitoral Reduction/ Clitoroplasty

A cosmetic surgical procedure for reducing the size of a clitoris that may be subjectively considered to be excessively large. The procedure generally involves removal of all or part of the erectile bodies of the clitoris. When the removal is total, the procedure may be called a clitorectomy.

Congenital Adrenal Hyperplasia (CAH)

A group of conditions caused by a genetic difference affecting the adrenal glands. Classical CAH is usually detected in infancy through early childhood, while the milder and more common form, Non-classical CAH, may cause symptoms at any time from infancy through adulthood. “Salt-wasting CAH,” which impacts chemicals needed by the adrenal gland to make cholesterol into cortisol, aldosterone, and androgen, can be life-threatening. Salt-wasting CAH may result in the adrenal glands making too little cortisol and/or aldosterone, which can cause the affected individual to become dehydrated and lose blood pressure if not treated urgently. The adrenal glands will also produce more androgen than usual, causing high levels of androgen exposure in utero. While CAH can occur in both 46,XX and 46,XY individuals, it only affects the genitals of XX children, some of whom are born with androgenized genitals as a result. Genitals in these cases may appear more typically female, more typically male, or anything on the spectrum between.

Differences of Sex Development (DSD)

A medical term used to refer to conditions that cause intersex traits, “DSD” is often used by medical practitioners (sometimes styled as “Disorders of Sex Development”), but it is seen as stigmatizing by many intersex people. It became a key term in the 2006 Consensus Statement process, during which some intersex community groups agreed to use it because it was an effective way to communicate with medical providers.

Gender (Gender Identity)

Social and cultural codes used to distinguish what a society considers “masculine” and “feminine” conduct and/or characteristics. Gender is also an identity and refers to a person’s internal, deeply felt sense of being female, male, both, or something other than female or male. It does not necessarily correspond to the sex assigned or presumed at birth.

Gonad

A gland that produces sex hormones (estrogen and testosterone) and gametes (eggs, sperm, or neither). This is a generic term that encompasses ovaries, testes, ovotestes, or undifferentiated streak gonads. Ovaries generally make estrogen, a small amount of testosterone, and eggs; testes generally make testosterone, a small amount of estrogen, and sperm.

Gonadal Dysgenesis

A condition in which the gonads do not develop into testes or ovaries but instead become undifferentiated “streak” gonads. Streak gonads do not produce hormones or gametes.

“Hermaphrodite”

A term once commonly used to refer to individuals with intersex traits. It is now considered pejorative and outdated, although a small number of intersex people have reclaimed the term.

Hypospadias

A condition in which the urethral opening is located somewhere other than the tip of the penis, such as the underside of the glans, the shaft of the penis, or the base of the penis.

Intersex

An umbrella term that refers to a range of traits and conditions that cause individuals to be born with chromosomes, gonads, and/or genitals that vary from what is considered typical for female or male bodies. A former medical term, “intersex” has been reclaimed by some as a personal and political identity. Intersex is not the same as transgender, which describes individuals whose gender differs from the sex they were assigned or presumed at birth.

Mayer-Rokitansky-Küster-Hauser Syndrome (MRKH)

Atypical development of the vagina, the uterus, and/or the Fallopian tubes in combination with typical 46,XX chromosomes and ovaries. MRKH sometimes also involves differences in development of the skeleton, internal ears, and in rarer cases, the heart, fingers, and toes.

Swyer Syndrome

A condition in which testes do not develop in a child with XY chromosomes (also called “46, XY complete gonadal dysgenesis”). Typical female external genitalia and a small uterus develop before birth. The underdeveloped gonads become fibrous tissue called “streaks” (neither testes nor ovaries). Puberty will not begin without exogenous hormones, which are also necessary for bone strength.

Vaginoplasty

A surgical procedure that results in the construction or reconstruction of the vagina. This procedure is frequently followed up with vaginal dilation – the repeated insertion of solid objects to maintain the size of the vagina – which is carried out by parents when the patient is a child.

I. Background

Intersex people are often surgically assigned a sex and then life is supposed to follow from that. Our lives highlight the problem that sex is really about power—it doesn’t matter how many sexes there are, the number doesn’t matter. It’s about power. And as a result of how that power is inflicted on our bodies, trauma is a huge part of intersex lives.

Intersex man, California, October 29, 2016.

Around the world when babies are born, one of the first questions every parent and healthcare provider hears is: “is it a boy or a girl?” Usually, a response is simply one or the other—and we have come to understand that such a binary is true, rooted in an absolute biology: boy, girl; male, female; one, or the other. However, that narrative obscures a far more complicated truth. As many as 1.7 percent of babies are different from what is typically called a boy or a girl. Around 1 in 2,000 babies is different enough that doctors may recommend surgical intervention.[3] The chromosomes, gonads, and internal or external genitalia in these children are atypical, in ways that are often at odds with social norms and expectations. This is what we mean by intersex children.

The discovery of intersex traits can occur in several different ways. Sometimes, doctors and nurses notice atypical genitals soon after birth, and inform parents then. In other cases, medical conditions such as hernias can trigger examinations that reveal gonads different from what is expected. Some intersex children discover their traits when they hit puberty. Others, due to layers of stigma, shame, and secrecy, only discover their intersex condition later in life when they access their medical records.

For parents and the doctors charged with helping them, this information can be jarring. As a veteran intersex activist explained: “Doctors are confronted with parents who are devastated—because it’s not just that your baby has a problem, it’s that they didn’t know it was possible for humans to be something in between male or female, and then they don’t want to think about their baby’s sex life.”[4]

Intersex people have existed throughout history and across cultures.[5] In the United States, it was in the 1960s when the modern paradigm of care—surgically assigning intersex babies a male or female sex—rose to prominence.[6]

In 1966, a psychologist at Johns Hopkins University named John Money advised on a surgical intervention that would influence the default standards of care for intersex babies through to today. Dr. Money achieved academic fame for his assertions that a person’s sense of gender was malleable in infancy, and therefore argued that babies exhibiting “ambiguous genitalia” could have their sex assigned surgically as infants without negative consequences.[7] In 1966, the parents of twin boys brought them to a hospital for circumcisions. One of the operations was botched, and completely destroyed the boy’s penis. Concerned about their child’s future sexual function and identity, the parents visited Johns Hopkins to consult with Money, a well-known expert in sexology at the time. Money convinced the parents to approve a sex-reassignment surgery and then raise their child—renamed Brenda Reimer—as a girl.  Money published a number of papers reporting that the reassignment was successful; he continued to see Reimer for regular check-ups for a decade. For years, the case was well known in medical literature as the “John/Joan case,” and Money’s prolific publications on the case greatly influenced the spread of early genital surgery on intersex children.

But the reassignment was not a success.  By the time he was 15, Reimer had transitioned to living as male. In 1997, Milton Diamond, a sexologist at the University of Hawaii, and Dr. Keith Sigmundson, a Canadian psychiatrist who had seen Reimer as a patient, published a paper based on Reimer’s outcomes that denounced early genital surgery on intersex children. They wrote:

We suggest referring the parents and child to appropriate and periodic long-term counseling rather than to immediate surgery and sex reassignment, which seems a simple and immediate solution to a complicated problem.[8]

That same year, Reimer disclosed his story publicly in a feature article in Rolling Stone, and denounced Money’s theory and genital surgeries on infants.[9] The 2000 book As Nature Made Him: The Boy Who Was Raised as a Girl, authored by the Rolling Stone journalist, documents Reimer’s full story.[10] When he was 38, in 2004, Reimer committed suicide.

Medical professionals would not countenance this kind of brutal surgical intervention today. Yet Money’s work helped spur the emergence of a dominant medical paradigm that favors surgical interventions on intersex children, including procedures intended to surgically assign a sex to children born with atypical sex characteristics. These procedures remain common in the United States, despite decades of activism by intersex people, and controversy within the medical community rooted in an increasingly wide understanding of the harms these procedures can cause.[11]

“Intersex,” sometimes called “Disorders or Differences of Sex Development” (DSD) in medical literature and by practitioners, encompasses around 30 different health conditions that affect chromosomes, gonads, and internal and external genitalia. In many cases, a significant factor motivating surgical intervention—and often the primary rationale for it—is the fact that these conditions cause children’s genitalia to differ from what is socially expected of men’s and women’s bodies. Surgical techniques have evolved over the years. Some medical practitioners claim (they admit, without strong evidence) that surgical procedures to “fix” intersex bodies have improved in recent years. Healthcare providers on specialized “DSD teams” say they observe trends toward delaying surgical interventions until children are old enough to consent themselves. Yet the practice continues, and the ways it transgresses the fundamental rights of intersex children remains fundamentally unchanged.

In a 2006 interview, Cheryl Chase (now Bo Laurent), the founder of the Intersex Society of North America, the first US intersex advocacy group, explained that what intersex people were asking for was in no way a radical departure—just fundamental rights: “…intersex people have not been subjected to such an intense and harmful medicalization for very long. The ways intersex people are treated by doctors—with shame and secrecy and unwanted genital surgeries—only became widespread in the 1960s.”[12]

Many intersex people first learn about themselves in a medical setting. For some, this occurs with the delivery of a diagnosis; for others, it is through experiencing repeated examinations without adequate explanation. For example, an intersex person in California who experienced repeated pelvic exams every time they visited the hospital for unrelated medical issues, told Human Rights Watch: “I came to understand that my genitals looked different because apparently, everyone at every hospital visit needed to see them.”[13] Still others, as they notice that their bodies differ from those of their peers and from social expectations, began to ascribe that difference—and the misleading medical  solutions offered for it—to other aspects of their life. An intersex man in Illinois said: “I thought the reason that I really needed the surgeries was that would make me straight. I didn't feel like I could be accepted by men or women. I knew I had tendencies towards men and I thought it was because my dick didn’t look normal.” [14]  

Of the more than 30 medical conditions that can cause intersex traits, some cause anatomical atypicality that, on rare occasion, requires surgery out of medical necessity. These necessary surgeries include removal of obstruction of the urinary tract or repair of bladder exstrophy (when a child is born with internal organs exposed).  Undescended testes in boys, which is a minor atypicality of the sex organs, requires a simple procedure

in early childhood to prevent future infertility.  Some intersex traits may heighten the risk of gonadal cancer. Of course, if cancer is present, treatment is medically necessary. However, when the risk is low, hypothetical, or will not arise for years to come, removal can safely be delayed until after puberty.

Intersex bodies much more often present traits that are atypical, but medically benign. These include a phallus that is larger than a typical clitoris but smaller than a typical penis; or a vagina that has a smaller-than-typical opening or a depth that is more shallow than usual; or a penis with a urethral opening that appears somewhere other than the tip of the shaft (hypospadias). These traits are not life-threatening or medical emergencies. Surgery to treat these traits does not improve necessary bodily functions. The operations are cosmetic—and in some cases, they are performed to address a perceived “atypicality” when there is no medical consensus regarding how much variation is “too much.” For example, there is no agreed-upon point at which a clitoris is declared “too large” or a penis “too small.”  

The Phall-O-Meter, developed in the 1990s by the Intersex Society of North America (ISNA), was a satirical activism tool to highlight how doctors made subjective judgements about atypical genitalia then based their surgical advice on that analysis. 

Operations aimed at “normalizing” these differences include clitoral reduction surgeries— procedures that cut and remove sensitive, erectile tissue in order to reduce the size of the clitoris for cosmetic reasons. Such surgery carries the risk of pain, nerve damage, and scarring, and yields no medical benefit. Gonadectomies, or the removal of gonads, are sterilizing if the gonads had the potential for fertility, and end natural hormone production, requiring lifelong hormone replacement therapy. Procedures to address hypospadias can result in intense scarring, pain, and infections, and often require multiple re-operations that increase exposure to these risks. 

A History of Intersex Activism and Evolution of Medical Protocol

1993: Cheryl Chase founds the Intersex Society of North America to “end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decided is not standard for male or female.”[15]

1996: Intersex activists protest treatment of intersex children at AAP national conference in Boston, MA. That date (October 26th) has since been deemed International Intersex Awareness Day.[16]

1996: In response to the activists, the American Academy of Pediatrics publishes a statement saying: “The Academy is deeply concerned about the emotional, cognitive, and body image development of intersexuals, and believes that successful early genital surgery minimizes these issues.”[17]

1997: Milton Diamond and Keith Sigmundson publish a paper denouncing early genital surgery on intersex children, based on David Reimer’s outcomes. They write: We suggest referring the parents and child to appropriate and periodic long-term counseling rather than to immediate surgery and sex reassignment, which seems a simple and immediate solution to a complicated problem.”[18]

1997: David Reimer, who was surgically assigned female after a circumcision accident by Dr. John Money at Johns Hopkins, and whose case bolstered the rationale for early genital surgery, publicly renounces Dr. Money’s experiment.[19]

1998: The Gay and Lesbian Medical Association (now GLMA: Health Professionals Advancing LGBT Equality) passes a policy resolution calling for research on outcomes of genital-normalizing surgery, and full disclosure of risks and alternatives by physicians to parents of intersex children considering surgery.[20]

2000: The American Academy of Pediatrics issues a statement referring to the birth of an intersex child as “a social emergency” and urging early surgery, while recognizing that “few studies have been done that address the social, psychological, and sexual outcomes…”[21] 

2004: The National Institute of Diabetes & Digestive & Kidney Diseases publishes a “Research Progress Report and Strategic Plan for Pediatric Urology,” recognizing: “[t]here is currently a crisis in clinical management of children with disorders of sexual differentiation, and it has received considerable public attention. It stems from two issues. First, for some of these disorders, there are insufficient data to guide the clinician and family in sex assignment. Second, the optimal application of surgery and its timing remain unclear.”[22]

2006: The Consensus Statement on the Management of Intersex Disorders acknowledges the lack of meaningful research and calls for further studies, while still allowing for genitoplasty, including clitoral reduction. This statement is adopted as a position statement of the AAP.[23]

2010: Thirty-two academicians write to the Office of Human Research Protections (OHRP) and the US Food and Drug Administration (FDA) calling for an investigation into alleged human research violations involving intersex fetuses and children.[24]

2010: The AAP publishes a position statement opposing all forms of female genital cutting, with no explicit exception for girls with intersex traits.[25]

2011: The first International Intersex Forum is held in Brussels, convening 24 activists representing 17 intersex organizations from all continents.[26]

2011: The National Institutes of Health gives a founding grant to form the DSD Translational Research Network (DSD-TRN) to: “Assess and respond to the specific needs of DSD patients by: developing psychosocial assessment tools specific to the needs of DSD families; developing tools to minimize the need for genital photography; assessing efficacy of and compliance to standards-of-care; discovering new genes causing DSDs.”[27]

2011: The World Professional Association for Transgender Health (WPATH) releases a revised Standards of Care that includes a section calling for careful staging of medical interventions for transgender children and youth, and the delay of irreversible procedures. However, the policy allows for early surgical interventions on intersex children.[28]

2011: The United Nations Committee Against Torture for the first time expresses concerns about “cases where gonads have been removed and cosmetic surgeries on reproductive organs… without effective, informed consent of the concerned individuals or their legal guardians ....”[29]

2012: Activists convene the second International Intersex Forum in Stockholm, and write an open letter to the UN High Commissioner for Human Rights highlighting the human rights issues intersex people face.[30]

2012: A paper in the Journal of Pediatric Urology concerning the “[t]iming and nature of reconstructive surgery for disorders of sex development” explains “The ideal timing and nature of surgical reconstruction in individuals with…DSD is highly controversial… evidence-based recommendations still cannot be made,” and recognizes that “clitoroplasty is essentially a cosmetic procedure…surgery carries the risk of disruption of the nerve supply of the clitoris.”[31]

2013: Activists assembled for the third International Intersex Forum in Malta publish the “Malta Declaration,” which calls for “an end to mutilating and ‘normalising’ practices such as genital surgeries, psychological and other medical treatments through legislative and other means.”[32]

2013: The American Academy of Pediatrics advocates psychological care prior to any desired, gender-affirming surgical intervention in the case of transgender youth, but does not address similar procedures on intersex children too young to express an opinion.[33]

2013: The United Nations special rapporteur on torture classifies nonconsensual genital “normalizing” surgery on intersex children as a form of ill-treatment, and says that such surgeries “often… arguably meet the criteria for torture, and they are always prohibited by international law.”[34]

2013: The World Health Organization publicly opposes early genital or sterilizing surgeries on intersex youth in its report, “Eliminating forced, coercive and otherwise involuntary sterilization.”[35]

2014: The provisional section on Lesbian, Gay, Bisexual, and Transgender Health and Wellness of the American Academy of Pediatrics publishes “Explaining Disorders of Sex Development & Intersexuality,” which states: “If it is not medically necessary, any irreversible procedure can be postponed until the child is old enough to agree to the procedure (e.g. genital surgery).”[36]

2015: The European Union’s Fundamental Rights Agency issues a report on intersex human rights issues, advising “Member States should avoid nonconsensual ‘sex-normalising’ medical treatments on intersex people.”[37]

2015: Malta becomes the first country in the world to legally ban non-consensual medically unnecessary surgeries on intersex children.[38]

2015: Twelve United Nations agencies release a joint statement referencing “unnecessary surgery and treatment on intersex children without their consent.”[39]

2015: Patient advocates and ethicists publicly resign from Disorders of Sex Development-Translational Research Network (DSD-TRN), a National Institutes of Health-funded multi-site academic consortium, citing frustration with the ongoing use of medically unnecessary surgeries on intersex children, use of genital photography of children in research, and, as one member put it in her resignation: “Being asked to be a sort of absolving priest of the medical establishment in intersex care.”[40]

2015: UN High Commissioner for Human Rights Zeid Ra’ad Al Hussein makes the following statement at the Human Rights Council: “Far too few of us are aware of the specific human rights violations faced by millions of intersex people. Because their bodies don’t comply with typical definitions of male or female, intersex children and adults are frequently subjected to forced sterilization and irreversible surgery, and suffer discrimination in schools, workplaces and other settings.”[41]

2016: The American College of Obstetricians and Gynecologists issues a committee opinion cautioning that genital surgery may not be appropriate for every adolescent with “abnormalities” and that counseling is recommended prior to surgery.[42]

2016: Physicians publish “Global Disorders of Sex Development Update since 2006,” stating: “[t]here is no evidence regarding the impact of surgically treated or non-treated DSDs during childhood for the individual, the parents, society or the risk of stigmatization…[t]here is still no consensual attitude regarding indications, timing, procedure and evaluation of outcome of DSD surgery.”[43]

2016: The Gay and Lesbian Medical Association takes an official position recommending delay of all medically unnecessary surgery on intersex children until the child can participate in decisions regarding their body.

2016: The American Medical Association board of trustees issues a report recognizing that “DSD communities and a growing number of health care professionals have condemned … genital “normalizing,” arguing that except in the rare cases in which DSD presents as life-threatening anomalies, genital modification should be postponed until the patient  can meaningfully participate in decision making” and recommending adoption of a resolution supporting treatment that, “except when life-threatening circumstances require emergency intervention, defers medical or surgical intervention until the child is able to participate in decision making.”[44]

2016: In its final rule issued for the Affordable Care Act, the Office for Civil Rights (OCR) of the Department of Health and Human Services states that “the prohibition on sex discrimination extends to discrimination on the basis of intersex traits or atypical sex characteristics. OCR intends to apply its definition of ‘on the basis of sex’ to discrimination on these cases.”[45]

2017: Intersex activists from Australia and New Zealand issue the “Darlington Statement,” which calls for: “The immediate prohibition as a criminal act of deferrable medical interventions, including surgical and hormonal interventions, that alter the sex characteristics of infants and children without personal consent. We call for freely-given and fully informed consent by individuals, with individuals and families having mandatory independent access to funded counselling and peer support.”[46]

2017: European intersex activists issue the “Vienna Statement,” which notes that, “until this day more than 50 times UN bodies, regional and national human rights bodies have called on governments, policy makers and stakeholders to put an end to human rights violations faced by intersex people – including taking the necessary legislative, administrative and other measures to guarantee respect for the physical integrity and autonomy of intersex persons and to ensure that no one is subjected during infancy or childhood to non-urgent medical or surgical procedures intended to decide the sex of the child.”[47]

2017: Activists convene the fourth annual International Intersex Forum in Amsterdam, and discuss “infanticide, intersex genital mutilation and other harmful medical practices, lack of appropriate and consented health care as well as discrimination in access to education, other services and employment.”[48]

2017: Three former US Surgeons-General issue a statement calling for a moratorium on medically unnecessary surgeries on intersex children too young to participate in the decision, noting that “Those whose oath or conscience says “do no harm” should heed the simple fact that, to date, research does not support the practice of cosmetic infant genitoplasty.”[49]

Non-disclosure of Intersex Status

They didn’t tell my parents. My parents didn’t know that they had deemed me a pseudo-hermaphrodite. My mother was kept under sedation for three days when I was born until they could tell her what I was. They just didn’t want her to wake up and she was going to say, is it a girl or a boy. That’s what it was—if they couldn’t tell the mother what sex her kid was they kept her under for a while.

60-year-old intersex woman in New York.

In the past, the doctors and the patients felt like you just needed to keep this a secret. I don’t think anybody feels that way anymore. It’s kind of like when the kid asks you “Where do babies come from?” They don’t need the full scientific explanation when they’re five-years-old that they need later on.

A gynecologist on a DSD team.

Medical protocols and practitioner behavior have historically driven stigmatization and marginalization of intersex people. In the past, some doctors deliberately did not disclose information to intersex people about their traits or diagnoses. Patterns of non-disclosure—including pressure on parents not to disclose to their children—have instilled shame and secrecy, negatively impacting intersex people’s lives as well as the lives of their families. As documented in this report, intersex people Human Rights Watch interviewed who discovered their traits and the truth about the medical history later in life were often able to eventually come to terms with the decisions made about their physical treatment. However, they continued to struggle with the trauma of knowing they had been deceived their entire lives. Bo Laurent, founder of the Intersex Society of North America, wrote in a 1999 essay: “The primary source of harm described by former patients is not surgery per se, but the underlying attitude that intersexuality is so shameful that it must be erased before the child can have any say in what will be done to his or her body.”[50]

Many intersex people were told by their doctors that they withheld information and their medical records from them in order to protect them from the truth. The experience of Ruth, described in a text box in the summary of this report above, is one such case, but she is not alone. [51] For example, after multiple efforts to obtain her medical records via mail and over the phone, Rebecca, a 56-year-old intersex woman who was 25 years old at the time, flew from Arizona, where she was living, to New York, where she had been operated on as a teenager, and confronted her doctor in person. “He said they were afraid I couldn’t handle it—that I’d commit suicide. I said that’s the furthest thing from the truth. I told him: ‘In my records, you wrote I was stable and well-adjusted and you still justified not telling me?’” Back in Arizona, she asked her doctor to help her understand what the records said. “The doctor told me she wasn’t sure if I should get the information—if I could handle it,” Rebecca recounted. “I let them do all this stuff and I get lied to? Why!” [52]

Susan, a 60-year-old intersex woman in California said that in 1976 when she was 19 and trying to understand what had been done to her body—including a large abdominal scar—she asked her child psychiatrist for her medical records. “She said ‘you don’t need them’ and asked if I had a boyfriend, and told me that clitoral orgasms were juvenile,” Susan said. Later that year, she was able to obtain her medical records from a hospital. The doctor there told her: “It seems like your parents were really confused whether you were a boy or a girl when you were born,” handed her the records and she walked out. “I found out later that the doctor immediately wrote a letter to the doctors who did the surgery telling them I turned out OK. I had walked out of that office suicidal,” Susan said. Several years later, when she decided to read the medical records herself, Susan said:

It undermined me even more than I could have imagined. The file said ‘hermaphrodite,’ ‘pseudo-hermaphrodite,’ ‘true hermaphrodite.’ And then it had a boy’s name that had been given to me crossed out and my girl’s name written over it. And I thought: everyone else in my family knows this?[53]

A 30-year-old intersex person who called obtaining their records in 2008 “an ordeal” told Human Rights Watch that when they finally did read them: “So much of the stuff written in there was bullshit—and so inappropriate. I read the doctor’s message suggesting that I should have surgery [in the early 1990s] in order to have a normal marriage and a normal sex life.”[54]

An intersex person in Illinois who underwent gonad removal surgery in the mid-1980s, clitoral reduction in 1990, and a vaginoplasty in 1997 told Human Rights Watch that they accosted the medical records clerk in 2006 at the hospital where their surgeries were conducted, demanded their records, and received them on the spot. They were a university student at the time, and first opened the file in their dorm room: 

It said…male pseudo-hermaphrodite, 46 XY. I was like: ‘oh my god, I am a boy. I’m a fucking male and I’m a hermaphrodite. I don’t know what pseudo means but I’m a hermaphrodite.’ So that put on a whole new layer of shame. I was just like: I’m a fucking monster. I’m a guy that somehow like turned into a girl and that’s also a hermaphrodite, and that’s pseudo and there’s some numbers with XY.[55]

As the person read through their file, they learned that they had undergone a gonadectomy at age one, and then a clitoral recession and resection at age three that left them with an apparently absent clitoris. In the medical records, the surgeon emphasized that “care was taken” to preserve the nerves. The name of the procedure as recorded suggests that the intention was to leave some clitoris, which came as a surprise to this person: “So that was brand new to me too, like that’s something you can’t just find out on the internet because you feel different—that’s person-specific.”[56] They told Human Rights Watch they later visited a gynecologist who attempted to point to an organ and indicate it represented a clitoris, but given the lack of sensation and their previous sexual encounters with women who had intact genitals, the person was not convinced.

An intersex woman who, on the advice of some support network members, asked her mental health provider to read her medical records with her in 2015, recounted:

I went to my therapist and we went ahead together and opened it together and read them together and it was probably the best thing I could’ve done because of all the trauma I was dealing with. So he opens the file and reads the first page to me and stops and says: ‘OK well I'm going to let you know something: Your name wasn't Dierdre.’ He said: ‘your name was Matthew.’ And that totally blew me away.[57]

And even for those who were able to obtain their medical records and learn the truth, that information did not inoculate against the pain of the deceit. For example, Ruth, who stole her medical records and confronted her doctor, said:

When you’ve been lied to thoroughly throughout your life by so many authority figures, including by doctors ... when you’ve been lied to so systematically like that, it’s really hard to know who you are. I have major trust issues because every person who should have been devoted to my care, it turns out they were lying to me—my parents, my doctors.[58]

A 20-year-old woman with CAH who underwent, in her words, “one surgery for function and one for cosmetic reasons” when she was an infant and said she was grateful for her parents’ decision told Human Rights Watch: “I had more of an issue with the lack of communication growing up rather than what actually happened [in the surgery].”[59]

Even for those who find out their intersex condition at a younger age, the process through which they gain the information can be traumatizing. For example, when Cathy, now 22, was 13 years old in 2008, she went to her annual endocrinology appointment. “The nurse asked my mom if I had diabetes, and she said no, I had AIS. So after that I looked up what AIS was and I found out and I was really crushed and confused mostly because it hadn’t been explained to me fully,” she said. “It felt like something that had to be really secretive, something that was wrong, something that was shameful.” Cathy said she was not comfortable speaking with her parents or doctors about the issue because they had both played a part in keeping the information from her.[60]

Parents of intersex children and practitioners told Human Rights Watch they felt strongly that it was important to disclose their children’s intersex traits, as well as the truth about healthcare decisions parents made on their behalf, to them as they grew up. Parents can struggle with disclosure—both on a practical and emotional level. For example, one mother explained that in order to present the information to caregivers in a coherent manner, she emphasizes that, “It is a medical condition, and would need to be explained as much as any other medical condition—like if [my son] had diabetes, I would say ‘he’s got diabetes you may have to check his blood sugar.’ And this is sort of like: ‘He has a DSD condition, he has to pee sitting down.’”[61]

Another mother recounted that although providing care for her 6-year-old daughter in her early life consumed significant time and energy, she felt she needed to protect her child’s privacy by not disclosing her condition even to close friends. “Even my best friend doesn’t know—I struggle with that. It’s not my business to tell her. It’s my kid’s condition and identity,” she said. “A lot of my grief and struggle is that I don’t want my kid to look back and say we didn’t do the right thing. I want her to see that I tried to be as respectful and caring and nurturing as possible—and that I fought away people who didn’t want to care for her.”[62]

“We’ve been super open with her about how everyone is different, every vagina is different,” said a mother of a 10-year-old intersex girl. “It’s not a thing that we do only because of her, but we know it’s helpful for her.”[63] A 46-year-old intersex woman explained how similar exposure to information influenced her. She said that until she came across a book with images of a range of genitalia, “I just thought that everybody else had the health class diagram except for me.”[64]

A father of a 3-year-old said: “There's nothing to be ashamed of an intersex child and we're not ashamed of [our child] and it's fairly obvious and clear.” He and his wife consulted a sociologist who specializes in intersex issues to seek advice on how they should navigate disclosing their daughter’s intersex status publicly—another common concern among parents, who attempt to strike a balance between upholding privacy and not contributing to shame. The sociologist counseled them that, “if this was a different type of medical condition—one not related to gender—nobody would ever think about concealing her condition.” So the parents wrote a letter to their daughter, explaining why they chose to speak to the media about their experience raising an intersex child. The father told Human Rights Watch:

We can give [the letter] to her when she's 13 or whatever and it explains why we wrote a book, why we did a documentary, why we participated in studies. We shared your face and your name and your story because we believe that we were saving other kids.[65]

Truth-Telling and a Child’s Right to Know

An endocrinologist who works on a DSD team recounted for Human Rights Watch the case of a 10-year-old patient she works with. While the patient had not been able to consent to the operation to remove her gonads, the parents were taking steps to ensure that their daughter was fully informed of her medical history and her health needs. The doctor said:

At age 10, the girl seemed solidly to be expressing a female gender identity. And she understood that [her parents] had her gonads out early in life and that she had an XY karyotype. So I said: “Let’s talk about puberty and tell me what your understanding is of your body.” And she explained it totally eloquently because her mom had explained everything to her over the years. The mother said: “oh you know [the doctor] said I should explain everything to my child and I was scared but I did.” And the girl was able to tell me her karyotype, that she had no gonads, and that she would need hormone replacement therapy for the rest of her life. So I feel like checking in with the families we treat and…helping them with that conversation with their kids is important. How you talk to your kids how you tell them about their diagnosis—this is something really valuable so that families don't go like five years without ever talking about it. We as providers can help mitigate some of that. [66]

Some practitioners told Human Rights Watch they had encountered parents who requested they not disclose a child’s status to them.[67] Other providers cautioned against overwhelming parents with too much information.

Providers Human Rights Watch interviewed observed a trend that DSD teams and specialists increasingly encourage disclosure of medical information. However, some doctors expressed during interviews with Human Rights Watch that they hesitate to be completely honest.

Practitioners who believe delivering complicated information about intersex conditions to parents is beyond their expertise should solicit other specialists—mental health providers and intersex support groups—to provide counseling. The 2016 Consensus Statement update notes that “routine incorporation of peer support into clinical care at the earliest possible time can ease what can be a bewildering experience for parents.”[68]

A mental health provider on a DSD team explained: “What we talk with parents about ... from early on [is] open and age appropriate communication, so educating their kids about when they were born their penis was a little different, their vagina was a little different,” she said. “It’s just really working with families to engage in being comfortable talking with their kids about sexual development and sexual differentiation.”[69]

Others said they still find delivering information about intersex conditions daunting, and hesitated to advocate for full disclosure. A gynecologist who works on a DSD team explained: I’m a believer in honesty and truth but I don’t know that some of these patients are ready to deal with it and that’s what’s really difficult.” She described disclosure of intersex conditions to patients and parents as an “interesting balance between answering their questions and not necessarily giving them too much information that they don’t want to hear.”[70] A mental health provider on a different DSD team said: “Sometimes we feel like we give the families almost too much information, and we’ve had families say, well just tell us what to do ... the information can be overwhelming.”[71]

A mental health provider on another DSD team told Human Rights Watch: “Nothing good—only bad comes from secrets ... and that there's never a question of whether you tell. It’s how, when, and what you tell—but it cannot be disinformation, it cannot be a lie ... it has to be developmentally appropriate and it has to start early.” However, this provider noted, he believes providers continue to play a role in lying to patients: “Are [providers] complicit with allowing parents to lie? Yes sure. You know it's a free for all. But nobody would openly advocate for lying. And so I see that there is progress.”[72]

According to an endocrinologist who works on a DSD team, “it's a tricky thing to figure out what information the parents or the children are ready to receive.” He acknowledged that disclosure practices have changed over time, explaining: “When I was in training many years ago we had patients that had forms of Adrenal Hyperplasia where it was kept a secret to the patient you know what their diagnosis was—the parents did not want them to know.” The medical community has made progress, he said. Today, he said: “We try to empower the children themselves in a developmentally appropriate way to understand what's going on so that when they have questions when they notice that, most often when we don't intervene, that their genitalia look different.” [73]

Practitioners, parents, and intersex adults told Human Rights Watch that the internet has revolutionized disclosure and information-seeking. Regardless of providers’ and parents’ comfort levels, however, the internet ultimately makes it impossible to keep information away from intersex people. “Families are very good about getting on the internet as soon as I present the initial conversation [about the diagnosis],” an endocrinologist said. [74]

A 31-year-old intersex person in Illinois said they first learned about their diagnosis in fragments of words they could not understand, but the internet made a difference. “Once I heard some terms, I went on Google. And I search Androgen Insensitivity Syndrome and I find out basic stuff you can find out about AIS. I’m so thankful for the internet,” they said.[75] Carmen S., a 32-year-old intersex woman, said she found not only technical information but empowering connections with other people online:

It was through the internet that I found websites and support groups and people that had different ideas, and role models for the first time. People were like, ‘being intersex isn’t a health concern, it isn’t a medical condition,’ and they talked about various procedures that I had been super uncomfortable with during my childhood and adolescence. People were saying: ‘Listen, these aren’t used for medical benefit. Doctors shouldn’t be doing this.’ And I thought: ‘Oh my god, I understand why I was really upset by this now.’[76]

Changing Medical Protocols

Beginning with the founding of the Intersex Society of North America (ISNA) in 1993, decades of public advocacy chiseled at the medical dogma supporting early non-consensual cosmetic surgeries on intersex children. Meanwhile, more and more intersex adults came forward to say they had been harmed by such surgery. However despite significant publicity—The New York Times and Newsweek ran major stories in 1997[77]—and controversy within the medical community, surgeries remain common. Healthcare providers say their attitudes have changed over time, crediting the stories of intersex lives irreparably harmed by early surgeries.

A practitioner told Human Rights Watch: “We’re listening to the adult patients who are telling us that they feel they were mistreated and mutilated and that’s a very powerful thing.” She said, “When somebody tells you what they went through at the hands of well-intentioned physicians and they feel like their rights were not respected, you can’t just blow that off.”[78]  Another practitioner said: “And a lot of advocacy work from patients to speak with the physicians at medical conferences and talk about their experience just made a huge difference—I think that's certainly a big part of where I learned about it and got a better understanding of what the outcomes are really like and what the repercussions are for the patients as adults. You know, because as a pediatrician, it's hard to know what happened to them 25 years down the road.”[79]

The impact has been tangible for some practitioners. An endocrinologist explained: “Many years ago, we thought we were doing the best thing for these patients. And then we started listening to the patients themselves.” Now, he said, “We've evolved our approach. We used to think that we had to make a decision immediately. We know that that's not the case and there's time for families to sort this out.”[80]

Doctors and researchers have spoken out against medically unnecessary non-consensual surgeries on intersex children. For example, in 2004, a group of researchers and physicians convened by the Hastings Center in New York released an article in which they said “none of the appearance-altering surgeries need to be performed quickly.”[81] In 2006, a consortium of patient advocates, parents, and medical providers published a set of clinical guidelines that urged “delay [of] elective surgical and hormonal treatments until the patient can actively participate in decision-making about how his or her own body will look, feel, and function,” promoted psychosocial support for families, and offered tools for professionals to support parents without unnecessary surgery.[82]

Perhaps the most significant change in care has been to establish “DSD teams” in hospitals around the country. Establishing multi-disciplinary teams to advise and provide care has changed practices considerably. However, it has not addressed the fundamental human rights issues of genuine informed consent and bodily autonomy. As documented in this report, some members of DSD teams we spoke with said that the teams remain hierarchical, with urological surgeons’ opinions overriding those of their colleagues.

One DSD team member, a gynecologist, explained: “I think the advocates have had a big influence on the surgical counseling that people are getting, and [today the team members] are all involved in different fields, so we all have slightly different perspectives.”[83] Another practitioner, a psychologist, called the pre-“DSD team” era of care “quite a 10 ring circus,” explaining that “it has been a very useful thing to have these centers of excellence where you get a lot of experience seeing cases,” and attributing the development to advocacy: “that’s probably come about because of the pressure from the parents’ groups, activist groups.”[84] However, while the establishment of multi-disciplinary teams may reflect advocates’ influences and address some of their concerns, it falls short of providing care that fully respects the rights of intersex children.

A urologist on a DSD team, for example, told Human Rights Watch that some surgeries—such as the vaginoplasty—should be delayed until a woman can consent that she wants it done. “A lot of women can have sexual function without ever having vaginoplasty so there's no reason to do it early on,” he said, adding that “the surgery itself can require things like dilation afterward which if you are an 18-year-old girl who wants to be sexually active then dilating your vagina every day after it has been surgically created for you, that’s fine.”

The urologist specifically referenced the trauma that can be caused by dilating girls—a practice that is no longer commonly recommended. He said:

Maybe [dilating as an adult is] a hassle but it's not something that you don't accept ahead of time. Not a big deal versus chasing your 3-year-old around the house with a vaginal dilator. I'm not a psychiatrist but I'm going to guess that it’s not good.[85]

Some practitioners cited the inertia they faced when attempting to establish DSD teams. For example, a urologist explained that his hospital was “almost certainly losing money” on DSD cases, calling the process of holding extensive and repeated consultations with families “horribly inefficient.”[86] Another practitioner said the medical system presents “only disincentives to working in a team” because “that’s not how our services are paid for.”[87] But in terms of the quality of care offered to patients, all providers Human Rights Watch interviewed agreed that DSD teams added value. Or, as a psychologist who treats intersex children at a hospital without at DSD team explained: “It’s hard for clinics where there’s not already a multidisciplinary team, because…[mental health providers] have to wait for medical doctors to request us.”[88]

As has been recognized for at least the past 10 years, a typical DSD team should ideally include specialists—pediatric subspecialists wherever possible—in endocrinology, surgery, and/or urology, psychology/psychiatry, gynecology, genetics, neonatology, and, if available, social work, nursing, and medical ethics.[89]

But the establishment of DSD teams, while a positive development in that it has de-centralized decision making, has not addressed the roots of the problem—that parents are not getting full information and unbiased advice about surgical procedures, and that medically unnecessary surgical procedures that carry significant risk of harm continue to be presented as legitimate options.  

One of the main problems within DSD teams, some practitioners told Human Rights Watch, was the divergent views from different disciplines of medicine, and the power structures that privileged surgeons’ opinions and advice to parents. While DSD team members interviewed repeatedly cited psychosocial reasons for performing genital surgeries on infants, and reported that mental health services were made available to parents as part of their decision-making process, some mental health providers emphasized that their input was rarely valued or utilized.

“Part of my job on the DSD team is to convince the other team members that there’s a crucial role for mental health,” a mental health practitioner on a DSD team on the East Coast explained. “In my first year on the team I was accidentally forwarded an email thread in which a few of the surgeons questioned why we even needed a mental health specialist.”[90] An endocrinologist on a DSD team said that while she had in the past three years advised all parents of intersex children (approximately 80 per year) to delay medically unnecessary surgeries until the child was old enough to have input, not a single family had taken her advice. “This decision is made in the end with our surgeons,” she explained. “And, you know, they're surgeons. If a family wants a surgery, [the surgeons are] much less likely than non-surgeons to say, ‘no we're not going to do that.’”[91] She said: “I'm probably one of the most open people about telling families not to do surgery and I've never had anyone not do surgery—except for girls with AIS; [on my advice, parents have delayed] gonadectomy.” She gave the following example: 

I had a family with two kids both XX karyotype both with CAH both with kind of moderate genital ambiguity. For the first baby, I went through not having surgery with the mom but she really wanted to have surgery. I said: ‘Well I'd recommend that you don't do a clitoroplasty.’ She still did a clitoroplasty. [92]

A veteran mental health provider on a DSD team said: “It's not as if we haven't experienced progress. But it doesn't seem right that patients have to wait for the team to idiosyncratically get to the point that they function well.”[93]

Alice Dreger, a medical ethicist who has written two landmark academic books on intersex issues, wrote a blog post on November 21, 2015, announcing her resignation from the Differences of Sex Development Translational Research Network (DSD-TRN), a multi-university consortium funded by the National Institutes of Health beginning in 2011. In her resignation announcement, titled “Rejecting the Tranquilizing Drug of Gradualism in Intersex Care,” Dreger wrote:

For twenty years now, I’ve been trying to help intersex people push for the rights of children born with intersex conditions. For twenty years, I’ve been saying pretty much the same thing—the same thing as most of them, the same thing Tiger Devore [an intersex man and activist] has been saying for thirty years: ‘Children born with intersex conditions and differences of sex development (DSD) should not be subjected to medically unnecessary surgeries and hormone treatments until they are old enough to decide for themselves if they want these interventions.’[94]

Dreger called for a change of mindset about gender: “We should try to fix our troubled minds, not children’s healthy bodies.” She wrote that she was increasingly encouraged by the parents she met:

They get this is what it means to be a good parent—to sort out the difference between atypical and unhealthy, the difference between a medical need and a social norm, the difference between changing a little bit of the world around your child and changing your child’s body to be retrofitted to a conservative world.[95]

Dreger highlighted that throughout her career, “While many clinicians have privately shared my outrage about these activities, in public, the great majority have remained essentially silent.” She wrote: “Working from within was a major goal of our early intersex work—to get in the halls of medicine and change it from within,” but “I can’t continue to help develop ‘conversations’ around ‘shared decision making’ that allow decisions to be made that I believe violate the most basic rights of these children.”[96]

Some TRN participants told Human Rights Watch they were blindsided and bewildered by the departure of Dreger and others (including Devore, who posted his own resignation letter on Dreger’s blog[97]). A DSD team member who is also part of the TRN said:

I think the advocates left DSD-TRN because there was a feeling that the group was not moving quickly enough against surgery. I think [advocates] definitely moved the dot as far as how the teams were approaching surgery, but I think people did not feel that it was time to say no to surgery all the time. And I think we have to be really careful.[98]

In a 2017 article published in the Journal of Pediatric and Adolescent Gynecology, Wiebren Tjalma, a surgeon in Belgium, documented a case of genital surgery on an adult woman with Congenital Adrenal Hyperplasia (CAH). Dr. Tjalma argued that “Genital correction surgery for CAH at an older age was easier, could be done in 1 step, and enabled the preservation of orgasm.”[99] Her results were challenged by two other doctors in a letter to the editor, in which they asserted that the surgeries should be conducted much earlier in an effort to prevent discomfort.[100] In a response letter, Tjalma explains: “Current practice is like a ritual and not on the basis of any evidence. Dare to change your thoughts about the preservation of erectile bodies. Women should not have mutilating surgery if there is no evidence. The quality of our sex life is important.”[101]

Bo Laurent, formerly known as Cheryl Chase, the founder of the Intersex Society of North America (ISNA) and a veteran intersex rights activist told Human Rights Watch:

Even if you find some people who had it who are happy, that doesn’t mean it’s safe or necessary. There are probably happy people, but there are a lot of very unhappy people–ruined people. And no one has proven that the interventions are necessary.[102]

The Persistence of Medically Unnecessary Surgery

I’ve gone to a number of the AIS-DSD Continuing Medical Education days, and if you're in a group [with] physicians and you say “who would do surgery on this child?,” no one raises their hand. And then if you look at [the data]…surgery is happening on almost 100 percent of these kids. But when you go to meetings no one says it. I think no one's reporting what's actually happening in the United States and I think it's really important to get an accurate representation of what's actually going on because... depending on who you're talking to you're getting a very different view.[103]

Endocrinologist on DSD team

Nationwide data on how prevalent surgeries are on intersex children do not exist. However, available data sources show that doctors continue to perform medically unnecessary cosmetic surgical procedures on children with atypical sex characteristics in the US—often before they are one year of age. US government data compiled from several voluntary-reporting databases, for example, show that in 2014—the most recent year for which data are available—hypospadias surgery was reported on children 505 times, and clitoral surgery was reported 70 times. Many hospitals do not participate in these databases.[104]

Other recent medical literature demonstrates that doctors are continuing to conduct medically unnecessary surgeries on intersex children. A 2016 paper in the Journal of Steroid Biochemistry and Molecular Biology that conducted a literature review of genital surgeries performed on intersex children between 2005-2012; the average age was 11.2 months.[105] In a 2016 paper published in the Journal of Pediatric Urology, doctors examined a cohort of 37 pediatric patients with atypical genitalia from children’s hospitals across the country. Of the 37 cases, 35 opted for cosmetic surgery on their children and two did not.[106] A 2017 paper in The Journal of Urology, documented that 25 of 26 intersex babies whose parents were recruited for the study from 10 DSD centers of excellence across the country, were subjected to genital surgeries.[107]

While published data show that medically unnecessary surgeries are being conducted on intersex children, practitioners interviewed for this report often reported that they observed general trends towards doing fewer surgeries (though they did not always specify which procedures). While some said they insisted on multiple counseling sessions with parents who were considering medically unnecessary surgeries, none of the healthcare providers Human Rights Watch interviewed said their clinic had instituted a moratorium on all medically unnecessary procedures. As examined later in this report, many practitioners described the information they shared with parents as based on hypotheticals about what it would be like to raise an intact child, and clinical expertise, not data on medical outcomes. This pattern is also reflected in a 2016 update to the 2006 “DSD Consensus Statement,” which includes a survey of 32 experts—mostly surgeons—on guidelines for surgeries. The document notes: “There is still no consensual attitude regarding indications, timing, procedure and evaluation of outcome of DSD surgery. The levels of evidence of responses given by the experts are low, while most are supported by team expertise.”[108]

Human Rights Watch interviewed 21 healthcare practitioners in the course of researching this report. While none shared exact data about surgery rates with us, we asked each interviewee to comment on trends they observed in their clinic, and in the practice of treating intersex people more broadly. We documented considerable disagreement and divergence on the issue of surgery, which in part reflects continuing conflict over appropriate standards of care.

Nearly every practitioner Human Rights Watch interviewed cited the establishment of “DSD” teams as having impact on their philosophy of care, and the number of surgeries their clinic conducted. Most practitioners interviewed by Human Rights Watch said they observed a general decrease in surgeries on intersex infants—a trend they linked both to changes in societal attitudes and changes in medical practice. Explained an endocrinologist: “We used to have this paternalistic attitude that we have to make a decision for them and that's the only way that they're going to be healthy and not be traumatized.”[109]

For example, one surgeon explained:

The egregious stuff that's happened is becoming less and—you just don't see it done anymore in this country. And when you have a big crowd across disciplines it really takes away your ability to do something extreme, and extremely stupid. That's a huge step forward. If I took somebody out of the DSD clinic and said I was going to cut off a little girl’s clitoris or something like that, the endocrinologist, the psychiatrist, the nursing staff, and the social workers would have my ass hauled into the ethics committee before I got a chance to go to the [Operating Room].[110]

“I am seeing fewer clitoral reduction surgeries over time—a definite decrease,” another practitioner said. She attributed the decline to a shift in attitudes about urgency and medical necessity:

When I started practicing there were a lot of people that recommended that ‘no, you need to do this really early on before children develop any thoughts about their gender so that there's no question and that sort of thing’…. Whereas I feel like now the surgeons I work with are more likely to say, ‘no we don't need to do anything unless it's going to cause a medical problem for the baby.’[111]

Another practitioner said that her clinic had not performed any clitoral reduction surgeries in the past three years. “The clitoral surgery has been sort of less emphasized has been my sense,” she told Human Rights Watch. “I think people are being much more cautious about not presenting surgery as an option when there’s something very mild going on, and this is even presented to [parents] who advocate for surgery. I think that there is a lot more shared decision making…of saying, these are the risk-benefits.” [112]

A urologist told Human Rights Watch her clinic sets a strict six month minimum age for medically unnecessary surgeries, which they communicate to parents of intersex children immediately. “We just explain that we really don't do any elective surgery for babies for six months, period. We reassure them that there is not going to be anything bad that happens to the child waiting for six months.”[113] This urologist said: “We're doing very, very few feminizing surgeries in general…. Since I've been here we've only done a few and I've been here three years. So I think we're being very cautious about anything that removes tissue.”

An endocrinologist said he observes “a general trend of ‘if in doubt don't do anything.’” He said: “We try to emphasize that while we're sorting things out it's best to leave things alone. If there's no urgency from a medical standpoint it's best to leave things as they are and what we have we're finding as time goes on that many of the patients are very comfortable with that.” He linked that to medical ethics: “That's an adage in medicine—above all do no harm.” He added: “I don't think you're going to find anybody that runs a DSD clinic that would argue with the fact that outcomes are better when you delay intervention in general.”[114]

A DSD team practitioner told Human Rights Watch his advice to parents is: “Probably less is more…. If you don't absolutely need to do surgery, don't do it.” He said: “My voice is always in that direction and I would say the rest of my team is moving in that direction.” However, he said: There are surgeries being done all around the country.”[115]

Another provider observed:

Certainly in some cases there has been much more stepping back and reconsidering—and at least the surgeons that we worked with at [my clinic] have now shifted their positions from, ‘oh no, we’re definitely going to do this here,’ to ‘well I guess we don’t have to do it right away—we could wait six months, we could wait a year, we could monitor undescended testes if you don’t want to take them out right away.’ So there’s certainly been a little more ambiguity in options introduced in the care of individuals.[116]

A gynecologist told Human Rights Watch: “We really don’t do vaginoplasties with AIS and MRKH—we’re waiting. And we’re not doing gonadectomies in AIS girls until they’re really old enough to speak for themselves.” Girls who are candidates for vaginoplasty are encouraged towards non-surgical options when they are ready. She attributes this decrease in surgical interventions to parents who understand non-surgical care options and become open to other ways of caring for their children. In cases of children who are candidates for gonadectomies, she said her team advises parents to wait until their child is older “and capable of making a decision.” She explained: “We tell them: ‘this is not a decision to take the testes out, this is a decision to take life-long hormone replacement therapy.’”[117]

However, an endocrinologist on a DSD team at a regional referral hospital said that while she observed many of her peers in DSD care speaking publicly about a decrease in medically unnecessary surgeries on intersex children: “Most patients at our center have cosmetic surgery to their external genitalia.” She said: “The main two groups that don't are the kids who are being raised female who have very mild virilization, and then the more developmentally delayed kids.”[118] This doctor also reported reviewing unpublished data indicating that medically unnecessary surgeries remain more widespread that many doctors acknowledge.

As documented in this report, doctors at different facilities across the US have observed markedly different rates of surgeries being performed. The result of this varied and non-standardized situation suggests that whether an intersex child undergoes irreversible cosmetic surgery or not depends on which hospital—or which doctor—they and their parents end up visiting. The lack of rights-based standards of care, combined with misinformation and intense societal pressure, means decisions often are being made on behalf of children based on prejudice, assumptions, and chance.

II. Autonomy and Integrity

A Harmful Paradigm

Despite evolution in care for intersex children and more than two decades of debate and controversy, the US paradigm of treatment for children with intersex traits remains grounded in the practice of early cosmetic genital surgery. And the paradigm continues to have global resonance.

In January 2017, the Council of Europe’s Committee on Bioethics published a sweeping report titled “The Rights of Children in Biomedicine: Challenges Posed by Scientific Advances and Uncertainties.” In a chapter on treatment for intersex children, the report paints a damning picture of the historical and contemporary practices that emanated from and continue to be implemented in the US. The report, written by Stockholm University professors, states:

The treatment protocols that emerged from the US-based recommendations were not based on any clinical trials or careful research. Rather, they had three theoretical ambitions: first, to support a preferred gender assignment, determined in part based on whether medical interventions could feasibly reconstruct a typical body for the assigned gender; second, to enable “penile-vaginal intercourse,” as the default and presumed preference for sexual activity; and third, to reduce anxiety among children about their atypical appearance, in part on the theory that such anxiety would lead to gender confusion. [119]

The authors note that, “Despite clinical attempts to find data supporting these practices, repeated systematic reviews of evidence have found no quality data confirming their safety and benefits for each affected child.” The authors emphasize that reports by intersex people include evidence of “genital dysfunction, scarring, loss of sexual feeling, loss of fertility, chronic pain, and the wrong gender assignment—with irreversible excision of genital and gonadal tissues.”[120]

For intersex people, the trauma of this treatment paradigm can last a lifetime. As a 65-year-old intersex man in California said: “In many ways, the trauma of how I was treated as a kid—I haven’t worked through it. It’s still with me, in ways I don’t always recognize. Meeting other intersex people has helped me more than anything.”[121]

Whether parents are alerted to their child’s intersex traits at birth, puberty, or another point in life, they can struggle with an onslaught of confusing information. Communication from doctors may instill feelings of shame. Pressure to conduct surgeries on the children to make them conform to socially “typical” understandings of male and female bodies can be overwhelming. Parents Human Rights Watch interviewed talked about their confusion and distress; their desire for information and support; and the comfort they found in knowing their child was healthy and would be able to, with support, live a happy and fulfilling life.

Like Jackie, the mother of the 6-year-old whose story appears in the summary of this report, some parents Human Rights Watch interviewed felt bewildered by what they perceived at the time to be insensitive behavior by their doctors once the child’s sex came into question; others said they felt bullied by the physicians charged with caring for them.

“Clinicians and parents alike refer to the period after the birth of an infant for whom gender assignment is unclear as a ‘nightmare,’” wrote Katrina Karkazis, a medical ethicist at Stanford University. “Not only does a child with ‘no sex’ occupy a legal and social limbo, but surprise, fear, and confusion often rupture the parents’ anticipated joy at the birth of their child.”[122]

Ava, a mother of a 10-year-old, told Human Rights Watch that when she began realizing her daughter looked different a few months into her life, she took her to the pediatrician. “I told the doctor she was swollen in her groin and asked him to take a look,” she said. “Then another doctor came in, and another, and I started getting suspicious.” Later that night, while she waited for the doctor to call with his assessment, she told her husband: “As long as it’s not hermaphroditism, I can deal with anything.” A week later at a follow-up appointment with a urologist, the doctors told Ava they weren’t seeing a uterus on the ultrasound. “I asked them what that meant—I kept saying: ‘what does that mean?’—but no one would answer me. I just wish they had pulled me aside at that point and said it was going to be okay.”[123]

Margy K., a mother in California, told Human Rights Watch she knew from pre-natal testing that she was having a boy, but the delivery nurse congratulated her on her “beautiful daughter,” making her confused. “I said to the nurse: ‘No, we had an amnio, it’s a boy,” Margy said. “And then everyone sort of went crazy. It was so stressful. They started calling in all these other doctors. They did all the tests and she was perfect—she was totally fine, but they still said there was a good chance she might expire overnight.” Steve, Margy’s husband, said, “We were like deer in the headlights. And then a gynecologist came in on the second day and told us: ‘You are quite the celebrities around the hospital—a boy named Sue.’”[124]

During the past 50 years, the medical paradigm in the US has held that appropriate adjustment to the gender assigned at birth would be dependent upon the external genitalia appearing entirely typical for that gender. There is, in fact, little to support this rationale for surgery in infancy: an intersex child can be raised as a boy or a girl without surgical intervention.[125] Despite the fact that children do not need sexual function in infancy and childhood,[126]  doctors often recommend surgical procedures during childhood on the premise of making the genitalia functional for future heterosexual penetration in adult life—even if such surgery actually results in diminished sexual responsiveness.  

Incomplete or improper counseling can leave parents ill-equipped for the future in which their child’s body will develop differently from their peers. This can result in shame and trauma. For example, an intersex person in Texas said: “The doctors and my parents decided that I should be female, so that’s what they made me legally on my birth certificate. But I was never really female enough for them, which led to a childhood of abuse.”[127]

Medical settings can be intense for anyone. For intersex children, their experiences of examinations, exposure, and treatment interventions can scar them for life. Pejorative or stigmatizing language from doctors, repeated genital examinations and photographs, and exposure of their bodies to multiple practitioners and students can be traumatizing.

An endocrinologist on a DSD team told Human Rights Watch:

I think that one of the things that we're learning as time goes on is that children, if they're not handled correctly, often have psychological scars because they view themselves as being defective and or that people think that they don’t have the same dignity as other people. Now that's never said out loud, but the assumptions underlying that are very clear.[128]

Such signals from doctors can be powerful. A mental health provider who works on a DSD team told Human Rights Watch that the team hosts a monthly lecture series. In the fall of 2016, a urologist spoke about the difference between function and appearance in surgical outcomes. She said: “Every parent wants their child to be normal, so we do these surgeries because parents are asking for them.” The mental health provider responded during the session. “Parents are going to ask you, and it’s your job to present to them that there’s a spectrum of options,” she said. “If you’re uncomfortable with an atypical child, then the parents are going to be uncomfortable with an atypical child, and they’re going to choose surgery.”[129]

A mother whose 17-year-old son was assigned female at birth through a surgical procedure said: “I think my child deserves an Academy Award because I know I would not have the strength to hold such a life together.” She raised the child as a girl and only in the past year, the child has decided to transition to being male. The mother said her message to doctors was: “When you cut, and you slap a label on somebody—that’s irreversible for that person. My child tried so hard to be a girl because that’s what the doctors told my child he was.”[130]

Genital or gonadal surgeries on intersex children too young to declare their gender identity always carry the risk of surgically assigning the wrong sex. Depending on the condition, this risk can be between five and 40 percent.[131] But assigning the wrong sex is not the only risk. Removal of gonads is sterilization if those gonads had the potential for fertility, and will lead to lifelong need for hormone therapy. The genital surgeries done on intersex children can result in loss of sexual sensation and ongoing pain. The procedures are irreversible, in that tissue or organs that are removed cannot be replaced, nerves that are severed cannot be regrown, and scar tissue can limit options for future surgery. While proponents of surgery claim that techniques have improved and they hope for better outcomes, they admit that evidence to support these hopes is lacking.[132]

Mark was born in 1983. “I had what they called ‘ambiguous genitalia’ and they couldn’t figure out whether I had AIS or gonadal dysgenesis.” Doctors told his mother to raise him as female. “My parents…wanted to preserve my body as it was, so they chose not to do surgery and took me home,” he said.

When Mark was 5 years old, an anonymous caller told Child Protective Services that Mark’s mother was “raising a little boy as a girl.” Mark remembers that CPS intervened, but he does not remember whether he went to court or not. “My mom was afraid of losing me so she consented to the clitorectomy and the gonadectomy,” he said. “I remember waking up in a hospital. I lifted the sheet and I could see a red X and I could smell blood, iron ... rust? That’s when it kind of hit me that something happened.”

When Mark was 12, he remembers traveling to another city for a medical appointment. “The doctor said he could create me a viable vagina so my husband could have sex with me,” Mark remembers. “But he said he didn’t recommend it right away because it didn’t seem like I was ready.” For Mark, that was a high point—a doctor that decided not to do surgery. Mark transitioned to being male in 2015, and his previous encounters with medicine have left him skeptical of doctors. “As an adult, I haven’t had a doctor demand to see my junk so that’s pretty good—that’s the bar I’ve set for being comfortable.”[133]

A 55-year-old intersex woman in a Midwestern state told Human Rights Watch she had at least six operations when she was a child. “There was one operation when I was 16. The doctor told me the reason they were going to do it was so that I could become sexually active and also so that the opening of the urethra and vagina was more distinctive.” She said neither the doctors nor her parents told her any additional details or asked her whether she wanted the operation. “So the surgery was done so that some guy could enjoy himself. And really, I never ended up—with all the surgeries—ever having sexual gratification because basically all nerves were cut away,” she said. “These butchers cut off every nerve known to man ... these are supposed to be doctors that first do no harm.”[134]

A 31-year-old intersex person in Illinois who had both “nerve-sparing” clitoral surgery and vaginal surgery as a child said that the surgeon explained that the operation was intended to make them able to “have sex with [their] husband.” The person experienced intense physical pain and psychological trauma as a result of the surgery. Speaking of sex with a long-term male partner, the person said:

Four years after my vaginal surgery, it got less painful [when we had sex], but I never had pleasure. Never never ever ever. It was never genital pleasure. It was never ‘this feels good, please keep doing this, let’s do this again.’ It was like ‘oh my God, this has become expected of me now, and to be normal I can’t just stop and say I hate sex.’ This is why my head’s fucked up. I could have done that but I just didn’t. So eventually I just became numb. The dick would go in. But then there was—it was like I could be reading a book, it was so boring. So then I started wondering what am I doing wrong? I must not be letting myself go enough or whatever. I just kept chalking it up to: ‘You're doing something wrong, you’re not relaxed enough, you’re not this enough, you’re not that enough, because the doctor said you're normal. You’re a girl and everything’s fine.’[135]

However, the impact of the surgeries can extend far beyond the physical outcomes or desires to be socially “normal.” Intersex people Human Rights Watch interviewed described the feelings of dread and horror they feel—decades after unwanted or damaging surgeries, genital exams, insensitive disclosure of diagnosis, and other experiences—when attempting to access healthcare. For some, this has led them to avoid care—including in emergencies.

“I always think someone's lying. I always think they’re up to something. The trust thing. I don't trust anybody,” an intersex person in Illinois said. “So that’s why it's hard to trust somebody with my vulnerability or my emotions. Because not only the doctors have done this, but my family,” they said. “For health care in general I just try not to go unless it’s an emergency.”[136] 

“I’ve had doctors write ‘ambiguous genitalia’ on the front of all of my charts,” said Neha, an intersex woman in California. “So when I get checked in or even go get my blood drawn, that’s the first thing everyone sees, and it determines how I get treated. They giggle at me, and I’ve had one person refuse to draw my blood before.”[137]

An intersex 23-year-old in New York said they got sepsis in 2014 after hesitating to seek care for symptoms that were, according to them, “very painful and clearly a UTI.” They stayed in bed for four days until finally deciding to call their doctor. “He rushed me to urgent care ... he did some blood work and said you might have died if you came in any later. I was in the hospital for a week and a half.”[138]

Nearly all of the intersex adults Human Rights Watch interviewed said they loathe to seek medical care. Some even said they avoid medical care altogether until friends or family members, afraid they might die otherwise, take them to the hospital—for example, one had symptoms of breathing failure,[139] another viral meningitis.[140] Some of those who did not avoid healthcare still saw the experience of going to a hospital or clinic as traumatizing. An intersex activist who voluntarily participates in endocrine studies at her primary care facility explained: “I choose this care for myself, which is very different from what was happening to me as a kid. And even though I choose to go there, I still experience PTSD when I walk in—even though cognitively I know I really want to be there.” She said: “This is the legacy that has been handed to me by the serial deception.”[141]

Carmen, an intersex Ph.D. student on the east coast, explained: “What parents and doctors don’t understand is that after surgeries, after procedures and treatments…sometimes the impacts of the treatments we received negatively affect us throughout our lives.” She said the common refrain from doctors and parents about making sure intersex people feel comfortable with how they look naked in a locker room is eclipsed by other concerns. “Screw the locker room—that’s not the big problem here. The problem is I’m 30 and when I touch people on the subway by accident I internally have a meltdown because I freak out when people touch me. And that is very much because of the medical treatment that I received,” she said.

Carmen said it was not until she was years into attending regular therapy sessions that she was able to begin addressing her trauma responses and working through her past. “It was just too much and too terrible and too shaming that I just thought, my conscious brain isn’t going to deal with this,” she said.[142] “The point parents have to understand is that where [they] think the problem is over—it’s not the end….We have to deal with it for the rest of our lives—and [parents] shouldn’t be making decisions based on really early concerns because those are not the biggest problems.”[143]

Irreversible Medical Interventions

In 1969, when Stella was 12 years old and at summer camp, she started having stomach pains and asked to be taken to a doctor. The doctor thought she had diarrhea, so he prescribed her enemas and suppositories. But the pain did not subside, so the doctor told her: “You may be starting your period but your hymen is blocking it, and I can do surgery to help release that.” During the operation, he identified some other traits that he told Stella’s parents about. “All I was told was that I wouldn’t be able to have children, but that they could fix my little problem in a few years,” Stella, now 60, told Human Rights Watch.

“And that’s what we started calling it—my ‘little problem,’” Stella said. “My mother took me periodically [to the hospital]. I would sit outside while she went in and talked to the doctors, then she would emerge really angry and take me out to a fancy lunch,” she said. “Later she told me those appointments were set up so medical students could examine me for their training—and because she always refused to let me become a test subject, the hospital refused to treat me.”

Three years later in 1972, when Stella was 15, she came home from the last day of school and her mother said: “We’re going to the hospital for your surgery…to fix your ‘little problem.’” According to Stella, the operation: “Took all the skin off of one cheek of my behind, wrapped it around a cord, shoved it inside of me, and sewed it closed--and then I laid there for 17 days.” She said: “There were people in the middle of the night who would come in, lift up my sheet, and say ‘oh she’s the one!’ and then remark about my genitals.” 17 days later they took the mold out, gave Stella a prescription for dilators to maintain the vagina that had been created without her permission, and sent her home. No one ever told her the diagnosis for her condition, or the details of the surgeries performed on her, just that she did not have a uterus. “My parents were very concerned that I turn out heterosexual, too—that was really all they ever mentioned,” she said.

For Stella, the experience launched decades of trauma and anxiety. “I had been having orgasms since I was really young and then all of the sudden doctors are telling me I have a sexual dysfunction and doing surgery on me,” Stella said. “That really messed with my concept of sexuality. I started learning that sex was about how I please men, how my body lived up to the expectations of men.”

It was not until her 40s that Stella pursued her medical records to learn about the treatment she had received. She also avoided necessary medical care out of fear of doctors and hospitals. “For 15 years, I didn’t go to a doctor. In my 30s, I lost teeth because I refused to see a dentist. If I got sick, I’d figure it out or I’d ask a friend to write me a prescription,” she said.

After several attempts to obtain her medical records, Stella finally was able to read them. “The files had ‘MRKH’ [Mayer Rokitansky Küster Hauser syndrome] written all over them—everyone knew except for me,” she said. “The shame I’ve never gotten over—I still have moments when I just cry.” 

Still, she forgives her parents for the choice they made. “My parents perpetuated it, but they weren’t responsible for it—the lies, the doctors told them to lie,” she said. “And my mother was completely isolated, she never talked to anyone about it.” And despite doctors’ attempts to “fix” Stella, she says: “I do not have a gender identity and I do feel like that was taken from me. I had very distinct memories of feeling like a little girl. Upon discovery of what went down in the surgeries, I felt like nothing—and most of the time I still do.”[144]

These procedures look very different today but are no less irreversible. Indeed the procedures being conducted today may seem just as primitive and abhorrent 10 years from now as Stella’s does to a reader today—but there will not be any way to fix it.

Parents who do opt for “normalizing procedures,” such as surgery, are often faced with traumatizing results—for them and the child both. For example, vaginal dilation is generally recommended after any of these procedures in adults in an attempt to prevent the requirement for re-operation. The procedure involves enlarging the vagina by placing a dilator, or device selected for its appropriate size, into the vaginal canal at regular intervals. In children’s cases, parents have carried out the dilation. It can be experienced by the child as sexual violence. In the past, doctors recommended dilation for children; this is no longer the case in contemporary practice.

Intersex people Human Rights Watch interviewed spoke of the trauma they and their parents suffered from dilation.[145] Lina, a 24-year-old intersex woman who underwent a vaginoplasty, gonadectomy, and clitoral surgery at a hospital in Massachusetts in 1994 when she was 18 months old, told Human Rights Watch: “Until I was 10, my parents did vaginal dilation to me. I never even knew why because I didn't even hear the words ‘Androgen Insensitivity Syndrome’ till I was 14. So that was definitely very traumatizing.”

Lina says her parents explained they thought they were doing the right thing because doctors warned them that, without dilation, her vagina would close up and become infected. She continues to suffer the mental and physical health consequences of both the surgery and the dilation, and despite these procedures being conducted, her vagina is not functional for penetrative intercourse. “I want to have penetrative sex now and I can’t without more surgery,” she said. [146]

Repetitive, Abusive, and Unnecessary Genital Exams

Genital examinations of children with atypical sex characteristics may sometimes be clinically necessary—and surgery may lead to more exams, especially when there are complications and the need for follow-up surgeries. However, in the past—and sometimes in the present—doctors have used intersex patients as teaching tools and conducted repeated genital exams that were not necessary for medical management.[147] The 2006 Consensus Statement addressed the issue by saying: “Repeated examination of the genitalia, including medical photography, may be experienced as deeply shaming.” While the medical community has in many cases improved its practices by conducting genital exams only when clinically necessary, doctors still sometimes subject intersex children to repeated and unnecessary genital exams. Some bring in teams to observe the procedure; some exams feature non-consensual photography of genitals and naked children.

While data are limited, research has shown that repeated genital exams on children,[148] as well as medical photography of children while they are naked,[149] can be experienced as sexual violence and trigger trauma responses. In a 1987 article, Dr. John Money acknowledged that children could perceive genital examinations as sexual abuse.[150] A 2015 study published in the Journal of Pediatric Psychology found that women with CAH with varying degrees of genital atypicality,

experienc[ed] the genital examinations in childhood and adolescence as adverse, stigmatizing events, leading to avoidance reactions and self-perception as abnormal, particularly when the examinations included groups of trainees. Some women also experienced as adverse the nonverbal and verbal reactions of individual physicians who were unfamiliar with [atypical genitalia].[151]

Dierdre, a 55-year-old intersex woman who had surgery at least six times between 1970 and 1978, told Human Rights Watch she was “always in hospitals since the first day of my childhood I can remember.” She said: “I basically recall pain and hurt…down there…in the genital area. I sure didn’t want [the doctors] touching me down there.” Like many other intersex people, Dierdre experienced these exams as sexual abuse: “It’s like having doctors sexually abuse you,” she said.[152] “Every time [the doctors touched me], I'd scream and asked to not be touched down there and the pain that was happening over and over and over again.” Dierdre has been working with a mental health provider for Post-Traumatic Stress Disorder (PTSD) for several years. She said she still has frequent vivid recalls of one episode in particular:

[It was an] auditorium setting and being stripped down the whole way, and my genital area was exposed, sprawled out, and then having white coats one at a time examining me down there, just doing whatever they wanted. And I literally—I can recall my parents being over on one end and I was crying and looking at them like please help me. And not a thing—they wouldn't do a thing about it, just let it happen.[153]

A 40-year-old intersex adult who grew up in the 1980s in a southwestern state recalled: “There was a sense of glee from the doctors who got to see me because I was a juicy specimen—different in all the ways they were interested in.” She said, after repeated examinations, “I think they lost touch that I was actually a person. It was terrifying—I was always seen with my mom, and she was complacent to the exams. I had many pelvic exams as a very young child, and a CAT scan with a metal tampon inside of me.” Asked whether she resisted the treatment and examinations, she said: “I just did it because I was a kid and that’s what you’re supposed to do when you have a disease and you think you’re going to die.”[154]

Another intersex adult recounted experiences they had during the 1990s: “I remember being tied down with my legs open, for doctors and nurses to come through and look and poke and prod and take pictures.”[155] An intersex woman who grew up in New Jersey in the 1960s and 1970s said: “There was nude photography—I always questioned what they told me and why they said they were doing it, but never got an answer.”[156] An intersex person in Illinois said of their surgery in 1997:

[After the operation], doctors came and lifted up my gown—just to see the results. And they would show interns too, I remember. You know like, ‘Hey, we have a group of blah blah blah here from blah blah blah, do you mind if we take a look?’ And I said yes to everything.[157]

An intersex woman in California told Human Rights Watch: “All of these exams on my body as a kid sent a strong message that I was freakish, and that I had something wrong with me that had to do with my sex.”[158]

As noted above, the 2006 Consensus Statement stated that “Repeated examination of the genitalia, including medical photography, may be experienced as deeply shaming.”[159] Follow-up studies on people with intersex traits who underwent exams have documented the impact[160] and such studies have influenced some doctors’ thinking about genital exams. One urologist Human Rights Watch interviewed echoed this data, explaining a case in which he conducted cosmetic genital surgery on a young child and then told the parents: “Don't come back and see me until she hits puberty because there's also pretty clear data to show that the more [kids are] constantly being examined and having multiple people come in and poke and prod them really doesn't help things.”[161]

However, that view is not universally upheld in practice. A mother of an intersex child told Human Rights Watch that when her daughter was 15 years old in 2016, the gynecologist “insisted on three people being in the room.” She agreed because the doctor guaranteed her daughter she would not touch her, just look. “Then she dove right in,” the mother recalled. “She not only touched, she pulled and prodded. And my daughter was screaming and telling her to stop and she wouldn’t stop. And finally I gathered the strength to say ‘you need to stop’ and she pulled away.’”[162]

Violations of Privacy and Messages of Shame

If you want to fuck somebody up psychologically, start calling a part of their body deformed and then see how that works out. The whole idea of disease and even the message the surgery sent is that there was something wrong that we had to fix.[163]

—Parent of a 2-year-old intersex child, December 6, 2016.

Seth and Christine delivered their first child in 2015 at a small hospital—a girl they named Sally. The morning following the birth, doctors told them Sally probably did not have a uterus, had testes instead of ovaries, and would be taken to a larger hospital in an ambulance in 15 minutes for urgent tests.

“They told us the ambulance and the oxygen mask were just a protocol, and that she was OK, but it was a lot of information and no explanation,” Christine said. “I was crying and nervous.” The parents followed their baby to a regional hospital. “For a day and a half we had a girl, and then they automatically went to calling her ‘baby’ and ‘it’ at the big hospital…and for me, it was too much to handle,” she said. Seth and Christine asked their pastor to join them at the hospital to help them navigate the emotional turbulence of the Neonatal Intensive Care Unit. “Before the doctors even explained to us what the medical situation was, they saw us with our pastor and made assumptions about us and told us we would need to be open minded about our kid—the baby they had just all been calling ‘it’ while I asked them to call her by her name,” Christine said.[164]

For some parents, the initial interactions with the doctors who deliver such news can change their approach to healthcare for their child for years to come. Karkazis, the ethicist at Stanford, wrote: “The heightened emotion and lack of clear communication can affect the relationship between parents and physicians, and this may inadvertently influence the gender assignment.”[165]

“The endocrinologist we were sent to was very insensitive. He had the door wide open, other staff came in and out while he was telling us about private health information,” a mother in a southwestern state recounted. “There was no counseling given to us at all… What we needed was someone to come alongside us and say they were going to figure it out with us. That would have made a doctor a hero,” she said. But the experience left the family scarred: “For 12 years from that day we didn’t take our child to the doctor.”[166]

When Ariel, now 24, was 17, she visited her pediatrician for her final check-up before transitioning to an adult practitioner. She wanted to ask him about her condition—the “messed up ovaries” her parents had always told her about. “I asked him that question and he wrote something on a piece of paper and slid it towards me, then got up and walked out,” she said. The paper read “hermaphroditism.” It was 2010. At first, Ariel thought he was lying. “I sort of buried it in the back of my mind. I guess I knew there was something different, I knew there was more than that. But I never had any real confirmation until I got my medical records and started learning for myself. Ariel obtained her medical records from her mother four years later when she wanted to schedule an appointment with an adult gynecologist. “When I found out what was done to me, there was…a lot of anger and a lot of, I just felt…bitterness, I felt betrayed. I felt like a freak,” she said.

Patty, a 57-year-old intersex woman in California who underwent surgery when she was 15 to remove her gonads and reduce the size of her clitoris, said her parents and doctors told her the procedure was supposed to address cancer. “It was clear to me that there was a lot of lying, but it made no sense to me,” Patty explained. “If there were pre-cancerous cells in there, you take them out. What’s the rest of this secretive behavior?” The endocrinologist treating Patty at the hospital during her surgery explained to her that she would need medical supervision for the rest of her life. “Then she told me to be careful,” Patty said, “and that unless I was seeing a specialist, not to tell them anything about this procedure—‘they won’t understand.” Patty was baffled. “I’m sitting there thinking: the doctors won’t understand cancer? Why would a doctor not understand cancer? So there were a lot of these messages that something was horrifically wrong with me that we shouldn’t talk about.”[167]

An intersex person in Texas told Human Rights Watch that in 2008 when they found out their formal diagnosis, that was the first time they heard the terms “DSD” and “intersex.” Before that, it was only “hermaphrodite.” But even though the doctors were kind and helpful in seeking out testing, “when they tried to explain it to me, in this attempt to explain it in terms that I understand, they told me about mythological creatures and aliens.” The impact of this messaging was devastating: “If they were trying to make me feel better, they did the exact opposite—I felt like a complete freak.”[168]

The trauma caused by such abrasive and stigmatizing care can stay with people for the rest of their lives. A 40-year-old intersex woman in California explained: “I knew people were working really hard to fix me, but that’s all I was—a problem that needed to be fixed. I thought of myself as a problem that needed to be fixed—that’s rammed in my psyche.” As a result, she said, “I have enormous trust issues. It’s a huge thing to think that you’re not worthy of real care at all.”[169]

The Impact of Affirmative Care

Sam, a 30-year-old intersex person who was diagnosed with 46 XY 46 XX mosaicism, underwent repeated genital exams as a child. Sam told Human Rights Watch that as an adult, they chose to have an orchiectomy and a hysterectomy:

I went to see an OBGYN and he was adamant that I have an exam. I told him I was intersex and my body looks different. And, just upon looking, he started making inappropriate comments so I got up and left.

Then I got a referral from a transgender friend of mine to a different OBGYN and I called and was starting my whole speech about who I am and she stopped me and said: ‘Do you have this part, do you have this part ... OK you have these parts, and those are parts that I work with so yes, I will schedule you.’ She talked to her front desk staff and everything, and even called the pelvic ultrasound technicians to tell them about how to talk about my body. She went out of her way to make sure they were completely prepared. Then during the exam, she asked me to move one part out of the way, saying: ‘I don’t work with that part and I don’t touch parts I don’t work with.’

And because I had spent my life being poked by doctors, it had never occurred to me until then that doctors didn’t have the right to manipulate any part of my body they wanted to.[170]

A 57-year-old intersex man who had undergone dozens of surgeries by the time he started seeing a mental health provider as a teenager said he started defending his doctors as a way of convincing himself the operations were necessary. “The more they would hurt me, the more I’d protect them—say to myself, ‘Well, that’s my doctor.’ It really became a twisted relationship,”[171]

Every intersex person Human Rights Watch interviewed, including people who asked not to be identified as intersex but rather as people living with a condition such as CAH, said speaking with people with their same traits changed their lives in positive ways. A woman in New York, for example, described how internet chat groups allowed her to meet other people and learn to not be ashamed of herself:

I found websites and support groups and people that had different ideas…. Being able to see other peoples’ perspectives, and then also seeing some people saying ‘I’m proud to be an intersex person’ was mind-blowing to me. I thought: you’re not completely ashamed of yourself? You weren’t told or made to hide this forever from everyone? You’re OK with it? That’s amazing.[172]

Some practitioners emphasized that managing parents’ emotional reactions to their child’s intersex traits is a crucial part of the discussion. Two practitioners Human Rights Watch interviewed specifically said they try to reinforce with parents that their child is healthy. For example, one urologist said:

We've had a lot of families that have come to us after they've had really negative experiences at their birth hospitals. We're trying to figure out how to handle them in a diplomatic way…we try to just validate the fact that they have a beautiful baby and are really excited that they brought their baby to see us. Sometimes when they see us it's the first time that somebody has said ‘Congratulations your baby is awesome!’—that kind of thing. And that goes a long way. It really does. And then all of the [subsequent] conversations become with parents who understand they have an awesome baby.[173]

III. Pressure from Doctors: Case Studies

I think the whole process of caring for our intersex patients is more medicalized than transgender care provided by the same doctors.

An endocrinologist on a DSD team, February 23, 2017.

Doctors are trained to fix problems with the tools that they have. They think of genitals as something that mark whether a baby is a boy or a girl and not anything more than that. Surgeons kept telling us: ‘well you can’t expect us to do nothing.’

−A veteran intersex activist, October 25, 2016.

The doctor's job is not to make a decision, coerce a decision, manipulate a decision, or intimidate a decision. The doctor's job is to present information and to maybe provide a recommendation. That's where I feel like the most egregious action came from is that we weren't given the material necessary to make informed consent.

−A parent of an intersex child, December 6, 2016.

Operating Before Diagnosis: The Story of Judy, Carl, and Jackey

Judy and Carl knew their third child was going to be a girl after a sonogram six months into Judy’s pregnancy; they had chosen to name her Julia. After a planned C-section, Judy asked the doctor: “How’s my Julia?” A nurse responded: “Oh, we need to take another look at her.” Judy recalled: “I noticed—after having had two boys—that she wasn’t exactly how it was supposed to look. Not quite a penis, and not quite a vagina—that was clear visually.” After four days of receiving confusing and contradictory information—and being told they needed more tests to determine the diagnosis—Judy and Carl left the hospital with their child, now legally named Jack and assigned male. They still had no diagnosis for the child’s condition.[174]

Two weeks later, Judy and Carl took their baby to a regional hospital to meet with an endocrinologist and a urologist. “They sent us for blood work, and a battery of other tests. They measured the phallus—there was no urethra in the little nub,” Carl said. A week later they went back and the endocrinologist told them there were no androgen issues, it probably wasn’t AIS. All other tests were inconclusive so the doctors recommended testosterone. “Let’s fix the mechanics anyway,” the urologist told them. “Your son can have any size penis he wants!”

Judy and Carl agreed to the surgery when their child was 11 months old.

In the first operation, in April 2010, according to Carl: “the doctor made a shaft and cathetered the hole. They scraped her thigh and got more meat to build up on what they could free up inside of her. Then she still peed out of the original hole after that.”[175] They scheduled a follow-up surgery for nine months later.

The second operation was to construct a phallus. “They wrapped everything around the catheter,” Carl remembers, “there was a lot of gauze and blood and bandages.” The family was back in the hospital after two days, as well as at the one-week and two-week marks to have the bandages changed. Jack got infections twice. “They did x-rays and sonograms and wanted to replace the catheter. They’re holding [him] down spread eagle—and he’s screaming bloody murder,” Judy said.

Two days after they were released from post-operative infection care, a letter arrived in the mail telling them Jack had tested positive for Partial Androgen Insensitivity Syndrome (PAIS). This meant his future gender identity was uncertain and his body would not respond like most boys to testosterone. Judy told Human Rights Watch: “After we’ve now gone through two surgeries and we had no idea of what to think of for the next 20 years ... what’s damaged or what’s not ... the whole spectrum of horror.”

The parents went back to the hospital where Jack’s surgeries had been conducted and met with the doctors. “We said to them: You need to explain PAIS. [The surgeon] is done giving Jack any sized penis he can ... so what is PAIS?,” Judy said. She told the doctors that she had been scouring the internet for information.  “So their response was ‘well there’s nothing wrong, he’s a perfectly healthy little boy…he can be raised as a boy … that was our first goal—to make sure that Jack is Jack.’” Carl said.

The experience left the parents devastated, and feeling betrayed. Their child, now 8, ultimately developed a female gender identity. She lives as a girl at home and school, and family and friends call her “Jackey.” The social transition from Jack to Jackey was smooth, but the effects of surgery will not be so easily undone.

Judy and Carl wish they had been given the chance to talk to other parents and intersex people before making this decision. “There should be a hotline or a referral service—at least we would have had an entry point. If we had had that, we wouldn’t have agreed to mutilate our child,” Judy said. “We are smart enough to rationalize things and think through the outcomes.”

“It’s frustrating, we’re angry,” said Carl. “We beat ourselves up about this—there are other situations where people need support. It’s not just intersex, it’s autism and Downs and other conditions.” Judy explained: “I want to give [the doctors] the benefit of the doubt. I can’t definitively say that they didn’t think the surgery was the right thing to do. But they certainly did not have the information they needed—even a diagnosis—and nobody interjected to slow everything down.”

Carl explained: “The doctors told us it was important to have the surgery right away because it would be traumatic for our child to grow up looking different. What’s more traumatic? This sort of operation or growing up a little different?”

Wendy’s Struggle Against Surgery Pressures

In 2004, Wendy gave birth to twins and planned to name them Susan and Sylvie. “Then a doctor came into my hospital room in the middle of the night after I gave birth and woke me up and said: ‘Don't name the baby Susan.’ And I said: ‘Why not?’ And she said: ‘Because we don't know if it's a girl or boy.’”[176]

Within a week, when blood tests had come back indicating that one of the babies had XY chromosomes, the tone from the healthcare providers had shifted. According to Wendy, a doctor told her: “Well you can raise a baby as a girl if you want.” When she asked why, and what that would entail, he replied: “Well we would probably suggest that you get surgery to turn the baby into a girl and raise it as a girl.”

Wendy was overwhelmed. “We were still waiting to see is the baby going to survive in the NICU and they're talking about ‘well you can turn this baby into a girl and it will be a lot easier,’” she said. She told Human Rights Watch: “The pediatric urologist actually had the gall to say to me, ‘if you ever want your child to be a real man and stand up and pee, you’re out of luck.’”

When Wendy left the hospital with her babies, she was still eager to learn more about the various care options for the child she now named Stephen. She attended a DSD surgery conference to gather more information and meet surgeons. “I approached one surgeon …told him about Stephen. I asked him which technique he would use on a child like mine,” she said. The urologist responded: “Actually I would decide once I get your baby on the table which technique I would use.”

Wendy opted to not have surgery performed on Stephen, now 13. “I decided I'm against it because...I don't know how he's going to feel if he's to identify as male for the duration or maybe it could change…. I don't want to do something that can't be undone.” Throughout Stephen’s childhood, Wendy felt pressured by doctors, family members, and friends to have surgery on her son. “I thought it's better that we don't because you know there's a lot of complications usually. So yes, he sits down to pee. Who cares?” Wendy and Stephen both told Human Rights Watch that he has never experienced bullying or harassment from peers as a result of his intersex condition.

But the constant pressure to do surgery has led Wendy to avoid seeking routine health check-ups for Stephen. “I avoid any kind of medical appointment unless it’s an emergency—it’s too intense, and it will mean people start talking about surgery,” she said. Stephen’s health has been good, she says, and different from what the doctors had originally warned about after his birth. “I was told early on in infancy this pediatric urologist told me he's going to have chronic urinary tract infections…and he’s had only one UTI ever,” Wendy said.[177]

The Impact of Openness: From “It” to an Option for Reversible Care

Seth and Christine, who endured having nurses call their daughter “it” at her birth hospital, met with a urologist to discuss surgery. “The urologist was the nicest person we had met so far, he had the best bedside manner,” Christine said. He told them: “My team will likely say you should keep the testes in, I would say remove them and let her have a normal life.” They scheduled the surgery for a several months later. Soon after they made the decision to operate, a fellow church member brought them dinner. To date, they had only disclosed to their friends and family that their daughter had a hernia issue—the diagnosis for her intersex traits remained unconfirmed, and providers at the birth hospital told them there was no support group so they had not met any other parents.

The woman from church asked some questions about the baby’s health, and then said offhandedly: “That sounds like AIS”—their daughter’s preliminary diagnosis. Christine wept, and asked her for more information. Within weeks they were connected to a counselor and a support group, and began to hear from other parents that surgery was not necessarily required or recommended. While visiting relatives in another part of the US, they sought a second opinion at a regional hospital there. “The doctors at [the second hospital] were very sensitive,” Seth said. “They didn’t tell us point blank that they suggest not having surgery, they just said they wouldn’t do it.” Christine recalled: “Even the social worker affirmed that our feelings were normal and we were doing things right—whereas before, the social worker [at the birth hospital] made me feel weird about being upset, made me feel like I was being a bad mom.”

The endocrinologist at the second hospital explained to Seth and Christine that, with their daughter’s condition, her genitalia may start to grow in atypical ways at puberty. She also told them about hormone blockers they could prescribe at that time. Christine said: “This sort of reversible intervention made us feel like we could have a real conversation with [our daughter] about her body before making decisions, so we decided not to have the surgery.” Seth said: “We were still not completely sure what to do, but we basically wanted time to think about it.”

When they called the urologist to cancel the appointment he responded: “I would really suggest that you do it. I need to have you in my office and I need to talk with you.” They immediately started engaging with support groups. “We had spent so much time feeling alone and now we had people to talk to. Someone from the support group told us we’d have to advocate for what we want. We asked for the panel of tests, which they hadn’t done yet,” Christine said.

They went ahead with the hernia operation as scheduled, repeatedly reminding the surgeon not to do anything else. “The urologist was still suggesting removing the testes up until the day of the operation, Christine said. “And then the anesthesiologist called [our daughter] ‘he’ and we corrected her. Then she did it again, and we corrected her again. And she replied: ‘oh right he has XY chromosomes but you call him a she.’”[178]

***

Other parents and intersex people Human Rights Watch interviewed recounted how medical staff pressured them to undertake irreversible procedures, including surgery, and, they said, made them feel they were being unreasonable when they resisted or asked questions.

Carmen, an intersex graduate student, told Human Rights Watch she found the care she received for her intersex condition bewildering and bizarre at the time. When she was 15 years old, in 2000, her parents took her to a specialist team at a hospital for a consultation. She recounted:

I always felt like the surgeons were threatening me, that I was always on the verge of my vagina not being long enough for them to decide that they would need to perform the surgery. And I remember a surgeon coming in and saying, ‘you’re on the cusp of where we would like the length of your vagina to be.’ And he sounded like a car salesman basically trying to hawk a shiny vagina, in front of my entire family. And gave us all business cards. I thought: ‘Where the hell am I right now?’[179]

Carmen’s experience echoed how other intersex people experienced their doctors—as salespeople. An intersex man who has undergone more than 30 genital surgeries to repair complications from his first one described the interaction he had with the surgeon who first operated on him: “That doctor was a total salesman, there wasn’t even a question of whether I had the right to say yes or no. Or whether I was told that there was anything that could possibly go wrong.”[180]

Others were pressured at crucial moments. Rebecca said that the day before her surgery, doctors did an ultrasound, and were excited because they thought they saw what was the tip of a uterus. “They gave me 5 minutes to decide whether I wanted to keep it or not,” Rebecca said. “And how they presented it was: ‘if you keep your uterus, we may be able to make you have a period, and if you have a period, you will feel more feminine.’”[181]

An intersex person in Illinois told Human Rights Watch that in 1997 when they were 11 years old they were taken in for a surgery to correct urinary leakage issues. They said:

Before the surgery the doctors came in and said, ‘so we noticed your vagina is a little bit smaller than average. And you know while we’re in working on your urethra and your bladder problem, we can make it a little bit bigger.’ And then they said it was so that you could have normal sex with your husband when you're older, which is something I really wanted—to have sex and be normal. [182]

A 40-year-old intersex woman in California who is raising a child explained: “A surgical solution to a social problem doesn’t actually make sense—but in the chaos of all the new information, it can seem like a logical move.” She said: “Framing the issue as a disaster sets parents on a chaotic course when really: your kid can have a happy, healthy life; your kid is going to be fine—they just have to figure out how to help their body develop in a healthy way like any other kid.”[183]

Neha told Human Rights Watch: “Doctors think they’re offering comfort by saying ‘we can fix this’ but that’s not helpful—[care for an intersex child] is a multi-faceted decision.” She said: “This is not concentrated on a couple of body parts and a few surgeries, it’s going to be a much broader thing and accepting that this is something life-long is part of it, people do that all the time.”[184]

Tracey, whose daughter has CAH, said that when her daughter was born in 2015, doctors pressured her and her husband to operate on the child. “There was also a lot of pressure time-wise,” Tracey said. “Because we kept getting told everyone gets the surgery done before age one ... so there seemed like there was a time crunch to make a decision.”[185]

“Medical Bullying”

Molly is a mother of three in a southern state. When she was pregnant with her first child, who is now 17 years old, she had an ultrasound to learn the sex. “I had prayed for a girl my entire life,” she said.When my child was born, she came out and they said it’s a girl. But even as ignorant as they were, they said: well your child’s got ambiguous genitalia ... your child was born with a really puffy labia and a very enlarged clitoris. So I’m a first-time mom, and it’s emotionally shocking and exhausting anyway. I knew something was wrong because there were lots of doctors in the room, lots of whispering. They did an ultrasound, and they called in an endocrinologist and a geneticist. And all these doctors were talking to us, and I didn’t have a clue what they were saying so I was really scared and confused. And I just remember them saying that she had no ovaries, no uterus. And they thought at the time that she needed to be on some sort of hormone so they sent us home on that so we were scared our child was going to die. Three weeks later, we had a meeting with a urologist that the doctors scheduled for us, and then at four months of age they scheduled surgery to remove the undescended testes. And I didn’t know anything about this and I remember begging the doctor: “Can’t we wait until our child is older?” Not even knowing what I know now—I didn’t want it done. But the medical community was all hush hush, rush rush, slap a diagnosis on so we can sign papers and go home. It was forced sterilization. I feel like my child’s rights were violated, I feel like my rights were violated. It was medical bullying.[186]

Even parents who are conscious of and equipped to manage the challenges of raising an intersex child told Human Rights Watch they struggled with pressures from doctors. Said Kate, the mother of more than one adopted intersex child: “We adopted intersex kids sort of knowing what the medical management part of it would be like, but we didn’t really understand the extent to which there would be pressure to get surgeries and other normalizing interventions.” With one of her children, who was diagnosed with hypospadias and chordee, she said: “There was a sense from the doctors that we were being bad parents…. Every time we went to [the hospital], they suggested we get corrective surgery.” After the seventh time he suggested it, Kate asked the doctor what surgery would entail. “He said it would be three summers for three surgeries, with a week of catheterization and pain meds after each operation,” she said. “So I said, ‘I’m glad you told me—I can’t imagine putting my son through that—taking away the next three summers from him, even if the outcome was a known thing.’”[187]

Ellen, a mother who took her 15-year-old to 46 medical appointments over the course of one year to get a diagnosis for her intersex traits told Human Rights Watch: “When the doctors found out I was researching, they said, ‘Oh another one of you parents.’ I tried to explain to them that I have a science background but they were not interested in engaging with me on that.”[188]

Parents told Human Rights Watch they felt pressured beyond the clinic as well—when family members and peers encouraged them to operate on their children. For example, one mother who has a 13-year-old and has chosen not to do surgery, said: “Everybody wants to know if you're getting surgery. My friends, my sister—everybody has told me that I need to do this.” She said: “I think they think they're doing you a favor or doing your child a favor because it's going to be hard to navigate through life be[ing] different.”[189]

A mental health provider on a DSD team said she observes among her colleagues that, “There’s a dichotomous ideal—you’re a boy or you’re a girl—so once we decide that surgically, you’re fine, it’s over.” [190]  A father of an intersex child said: “What changed everything for us was when an endocrinologist sort of inoculated us against some of the stuff we would need to decide. She said: ‘You don't just take the recommendation. Do your own research and have lots of questions.’”[191]

Everyone Human Rights Watch interviewed—parents, providers, and intersex people—acknowledged that the situation for new parents was fraught and stressful. Even parents of intersex children who take a strong position against surgery explained how they remain sympathetic to all other parents in the position of making such a decision. For example, one mother who is a member of a parents’ support group said: “Unless completely medically necessary, surgery should not even be a conversation topic. Parents are too vulnerable.” Describing her interactions with parents who approach the support group with questions about surgery, she said: “Parents are scared of a lot of different things, and doctors are powerful.”[192]

IV. Limited Data on Outcomes

We are doing the best that we can and we're doing what we think is best but there's not a lot of data to guide our decision making and recommendations.

A urologist, February 6, 2017.

Data to guide intersex medical care are limited. There is no central mandatory reporting database on surgeries in the US, so the most reliable sources are a voluntary-reporting database, which is incomplete, or medical journal articles, which give a significant—albeit limited—snapshot of current practice. In addition to there being limited data about surgical procedure instantiation, studies that examine surgical outcomes (and are used by practitioners when advising parents) often fail to ask important questions regarding whether the patients were ever given the option to not have surgery, or what the patients think about their lives had they not been operated on.

There is also a lack of data regarding outcomes among individuals who did not undergo surgeries—a gap that practitioners frequently cited in interviews with Human Rights Watch as a reason they felt they could not advise parents to forego medically unnecessary surgery. Unfortunately, after over 20 years of debate, the research community has failed to produce many significant studies of outcomes among the intersex people who have avoided genital surgery.

In a 2003 study in the United Kingdom, researchers found that, “The 18 women who had undergone clitoral surgery had higher rates of non-sensuality (78%) and of inability to achieve orgasm (39%) than did the ten who had not had surgery.”[193] In a 2012 study by a group of doctors in the Netherlands and Belgium that featured 33 intersex participants who had not undergone surgeries, the authors explained that:

Currently most clinicians consider that childhood genital surgery is indicated in those with a higher degree of genital ambiguity to avoid the assumed psychological distress of passing through childhood and adolescence with abnormal looking genitalia. However, it has been suggested that a vagina is not necessary for a young girl prior to menarche or sexual intercourse. This was confirmed by women with complete absence of the vagina (e.g., CAIS), who indicated no psychological or developmental problems until they experienced primary amenorrhea [reached menstruation]. It would seem logical then to defer vaginal surgery until later in life…[194]

One of the most comprehensive studies was Dr. John Money’s 1954 Ph.D. thesis, in which he concluded that intersex people living without surgery were overall psychologically healthy.[195] 

Practitioners Human Rights Watch interviewed expressed a range of views on which data should inform decisions about surgical interventions, and which data was missing from the debate. When asked whether they could support a ban on medically unnecessary surgeries on intersex children, they nearly universally cited a lack of information with regards to non-surgical outcomes as a reason they could not. Their explanations of what this lack of data means for the debate over medically unnecessary surgeries—as well as clinical decision-making—ranged from a belief that they could not ethically advise parents to opt out of surgery until there was scientific data that demonstrated an intact body could survive social stigma, to a narrow focus on gender identity outcomes as the principal determinant of an intervention’s success.

“The issue with the DSD is that there is no hard data,” explained a practitioner. “So all we have is unfortunately a very uninformed debate. And in that setting, unfortunately, you have to make a decision. You either do surgery at a younger age or you postpone surgery,” he said, explaining: “In a situation where you have to make a decision you make the best decision you can based on the data that you have, which is pretty limited.”[196]

A gynecologist on a DSD team argued: “I really think that we don’t have great data on if we don’t do surgery, is it better than if we do surgery.”[197] A urologist echoed her, saying: “I really don't think we know whether doing early surgery or not doing surgery is best.” She explained: “I certainly appreciate that there are individuals that are incredibly scarred from their early experiences, and I think that somewhat has to do with [the quality of the] early surgery [and] with lack of disclosure,” adding: “The trouble that I have is that we do not have data to tell you what's best.” The urologist told Human Rights Watch that she, therefore, is taking “a moral position” that “if we don't have clear data either way we have to present all the options. In these conditions…it becomes much less clear if you're trying to improve both sort of functional and psychosocial outcomes.”[198]

A mental health provider on a DSD team explained: “It's not great evidence but where we have a reasonable amount of evidence—it is from people who have received surgery.”[199]

However, a lack of data on outcomes for intact children does not support defaulting to conducting irreversible and medically unnecessary surgeries that carry the potential for harm. Indeed, the available medical evidence points overwhelmingly in the opposite direction: that the well-documented harms of these operations should be a primary factor in doctors’ recommendation to defer them until the patient can understand and consent to the procedure. Or, as the former US surgeons-general argued in their 2017 article, “our review of the available evidence has persuaded us that cosmetic infant genitoplasty is not justified absent a need to ensure physical function,” explaining that the belief that surgery can lead to better psycho-social outcomes is based on “untested assumptions rather than medical research.”[200]

A urologist on a DSD team told Human Rights Watch: “In terms of medical necessity…I think drawing a hard line without hard data might just alienate many [practitioners].” She said: “Our program is very progressive compared with others. And even this—what I see as a hard line without data—puts me on the defensive.” She suggested instead “some sort of guideline in terms of presenting all options to families, including about all surgical options…”[201] Another urologist said: “I think that we don't have enough data to have universal guidelines.”[202]

Many practitioners Human Rights Watch interviewed articulated a hypothetical study which, they argue, would provide sufficient medical evidence to settle the question over whether early surgery is effective or not. In the words of one practitioner, the study is both complex due to the size of the intersex population, and impossible due to the necessity of randomly assigning babies to surgery:

The ideal would be which isn't really possible, but…do you have a cohort of babies that have surgery, and a cohort that doesn’t, and you have long term outcomes. Quality of life, patient-reported outcomes, urinary infection, etc…. And then you would have fertility and malignancy data for all the different conditions. But you can't get away with that because you can't randomize babies that have very rare conditions to those sorts of things.[203]

In her book, Fixing Sex, Katrina Karkazis, a medical ethicist at Stanford University, highlights the logical acrobatics at play in the debate over data. “When [the data] debate first erupted, surgeons frequently dismissed the complaints of adults with intersex diagnoses as those of the disgruntled [and vocal] minority,” she wrote. She explained:

[A]s increasing numbers of studies have begun to demonstrate poor surgical outcomes, some surgeons and other clinical specialists discount even these findings. Some also argue that research on surgical practices and outcomes are often irrelevant since measures of adult functioning assess surgical techniques almost two decades old. Surgical results may have been poor in the past, the reasoning goes, but since surgery has improved today, one can reasonably expect better surgical outcomes as well. This argument has a dual effect: it simultaneously acknowledges previous poor outcomes and effectively discounts any concerns about poor outcomes from today’s surgical practices. By charging that adequate studies are impossible because they will always assess old techniques, surgeons and others deflect current as well as future scientific and anecdotal evidence of poor surgical outcomes.[204]

Given this lack of data, the real question is whether it is ethical to proceed with medically unnecessary surgery on children when there is documented evidence of harm, and the supposed benefits are unproven. As detailed in this report, many human rights bodies that have considered the question have concluded it is not.

V. Lack of Informed Consent

We had to fight really hard emotionally, and just do a lot of work on our own to be able to make informed decisions regarding care for our daughter. Doctors provided us with [claims] that are not backed up in the literature. It's stuff that has just always been done in medicine. It's based on certain hetero-normative values, which may be [our daughter’s values] or they could not be—and we have no way of knowing until she comes of age.

Father of a 2-year-old child with CAH, December 6, 2016.

I think there's an issue of consent. There are surgeries that you need to do prior to a child being able to consent for them. But sexual function certainly isn't one of them.

A urologist on a DSD team, February 15, 2017.

Informed consent is a fundamental aspect of medical ethics—protected by international human rights law, and enshrined in American medical standards. The Universal Declaration on Bioethics and Human Rights, issued by UNESCO in 2005, outlines ethical issues related to medicine and the life sciences, and provides a framework of principles and procedures to guide states when they formulate policies in the field of bioethics. It states: “Any preventive, diagnostic and therapeutic medical intervention is only to be carried out with the prior, free and informed consent of the person concerned, based on adequate information.”[205]

In a 2009 report to the United Nations General Assembly, the Special Rapporteur on the right to Health stated: “Guaranteeing informed consent is fundamental to achieving the enjoyment of the right to health,” emphasizing that governments are required to “ensure that information is fully available, acceptable, accessible and of good quality,” and that information should be “imparted and comprehended by means of supportive and protective measures such as counselling and involvement of community networks.”[206] However, the special rapporteur observed that:

While informed consent is commonly enshrined in the legal framework at the national level, it continues to be compromised in the health-care setting…as a result of the power imbalance created by reposing trust and unequal levels of knowledge and experience inherent in doctor-patient and researcher-subject relationships. Structural inequalities exacerbated by stigma and discrimination result in individuals from certain groups being disproportionately vulnerable to having informed consent compromised. [207]

With regard to surgical procedures on children, the special rapporteur called on providers to “strive to postpone non-emergency invasive and irreversible interventions until the child is sufficiently mature to provide informed consent,” arguing that such interventions are “particularly problematic in the case of intersex genital surgery, which is a painful and high-risk procedure with no proven medical benefits.” [208]

Depending on the procedure, the negative consequences of surgery on a child’s genitals or internal reproductive organs can include:

  • scarring,
  • incontinence,
  • loss of sexual sensation and function,
  • psychological trauma including depression and post-traumatic stress disorder,
  • the risk of anesthetic neurotoxicity attendant to surgical procedures on young children,
  • sterilization,
  • the need for lifelong hormonal therapy, and
  • irreversible surgical imposition of a sex assignment that the individual later rejects.

In the United States, the process and the information that clinics share with families remains piecemeal and highly variable; the care families receive depends on which clinic or practitioner they visit.

Providers Human Rights Watch interviewed acknowledged a lack of centralized standards in their care for intersex patients. All practitioners Human Rights Watch interviewed said they were providing all relevant scientific information to the families they worked with; every clinic claimed they referred parents either to support groups, their own network of parents of intersex children, or both. Providers at two clinics said they even share United Nations human rights statements on intersex surgeries with parents as part of the informed-consent process. Such claims contrast, however, with the accounts of many parents (including parents whose children were treated in recent years) of inadequate or inaccurate information and failure to refer them to peer support at other clinics.

Parents told Human Rights Watch that as they managed the deluge of often bewildering information from various sources, the most difficult relationship to navigate was that with their children’s healthcare providers. Some parents spoke of doctors who were kind, patient, helpful, and informative—but dismissive when the parents decided to opt out of surgery. Some described difficulty in obtaining accurate information about surgical procedures and their potential outcomes. Some parents and individuals who opted for surgery told Human Rights Watch that their doctors had not provided them with a complete picture of the risks and alternatives, or had even provided misleading information—in other words, they were never given the opportunity to exercise meaningful informed consent. Nearly every parent Human Rights Watch interviewed said they were presented with medically unnecessary surgery as an urgent need at least once during their pursuit of care for their child.

A 14-year-old intersex girl whose parents opted to do gonadal surgery when she was four months old told Human Rights Watch that while she was not unhappy with the outcome of her surgery, and she understood her parents were only trying to do the best thing for her, she remained upset that her parents were left with no alternative but to act based on limited information and without contact with intersex support groups. “Parents should know that if they do this, the kid never has a chance to decide for themselves whether they want it or not,” she said.[209]

One father whose 2-year-old daughter has salt-wasting CAH, a condition with chronic life-threatening elements, described a year-long struggle to obtain reliable data about the medical necessity of surgery on his daughter. He said he grew increasingly frustrated with how advice was presented as absolute fact: “[I understand] if knowledge is limited—what I get upset about is when knowledge is presented as a guarantee or as a certainty when that's not true,” he said. “I'm perfectly comfortable with limitations; every field has them. But when those limitations are glossed over or just not presented, then we're unable to make decisions for our daughter.”[210]

A mother in California said that she and her husband felt rushed into a decision to agree to surgery on their daughter by the three medical teams they consulted with.  “Once they found the diagnosis of Swyer’s, they said she had to have a gonadectomy—they said it has to happen as soon as possible,” the mother recounted. Her husband said: “What we didn’t have was the help of the community like we do now—we would have had a broader perspective. We understand they needed to come out, but we didn’t need it to happen right away.”  The parents elected to have surgery when their daughter was four months old. “It was the hardest thing of my life,” said the mother. “She’s just a baby and it was a war zone in there—so stressful. I just wish someone had said: ‘she’s OK, she’s perfectly healthy, there’s nothing wrong with her, surgery can happen later and here are some people who have been through your situation.’”[211]

Some practitioners explained that surgery decisions should correspond with how the individuals want to use their bodies. For example, one surgeon who called genital surgery “an emotionally charged issue,” said:

If I tell you I'm going to operate on you, but if we don't there's a 50 percent chance you'll never need the operation…. If you just give that much information to a surgeon they're going to say, “why the hell would I do it?” And most patients would also say the same thing. And so in the cases of CAIS [Complete Androgen Insensitively Syndrome], I advocate that surgery—vaginoplasty in particular since it is often required for these women who want to have an active sexual life—should be done when this person can say they want to use their vagina for sex.[212]

Thomas, a clinician and the father of a 2-year-old girl with CAH questioned a urologist’s claim that leaving his daughter’s genitals intact would put her at 75 percent risk for a UTI. Thomas said: “Doctors provided us with [information] that's not backed up in the literature. It's stuff that has just always been done in medicine.”[213] He continued:

The doctors essentially presented us with [a series of] arguments that went from ‘she won't remember the surgery if you get it done now’ to ‘and then the skin is more plastic when she’s younger’ to ‘the outcome literature that is spotty in terms of success because it’s based on antiquated techniques these newer techniques are going to have even better outcomes’ to ‘she will avoid any social or uncomfortable experiences based on her anatomical difference,’ and finally to ‘the risk of UTI is high’—that was every doctor’s last resort when we asked questions, to talk about the UTI risk.[214]

Thomas told Human Rights Watch he and his wife, Tracey, who were open to the idea of doing surgery on their daughter, sought out a specialist physician who could explain the risks, benefits, and medical necessity of the operation, but never received information that corresponded with the medical literature they had read.

As Thomas explained, the urologist asserted there was a 75 percent risk of UTI, but could not say where that number came from:

He said: ‘75 percent.’ So I replied: ‘OK where did you get that number from ... I have not found that in what I’ve read.’ And he said: ‘Well it's just kind of in my experience.’ So I asked: ‘How many children have you seen who have not had the surgery and what are their rates of UTI?’ And he said: ‘Well I don’t know.’

Thomas was upset. “It's not 75 percent because if that's out there somewhere it is well-hidden. I have scoured every database that I could find.”

Thomas and Tracey echoed what Human Rights Watch heard from other parents—that the tone of the consultations suggested the doctors thought they, in rejecting surgery, were being bad parents. Tracey said: “The doctor said she would come to us begging for the surgery. Our five-month-old daughter—he could just tell that she would come to him for surgery.”[215] Meanwhile, Thomas said: “Nobody told us about the effects, the potential effects of the anesthesia on a child under the age of two years let alone a six-month-old, or the possibility of frequent revision surgeries—which is really the professional advice we wanted to get.”[216]

VI. Justifications for Surgery

A doctor recommended surgery [that would require] sedation, and it made us uncomfortable. We asked him: ‘Can you give us a medical reason for the surgery?’ He couldn’t.

A mother of a 10-year-old intersex child, January 9, 2017.

Despite limited data on outcomes and significant evidence of the harms early surgeries can inflict on intersex people for the rest of their lives, some doctors and parents continue to justify conducting the operations. Doctors give different reasons given for the continuation of the practice, notably the frequent belief that “normalizing” surgery will ease children’s socialization throughout childhood and life as adults. But there is no clinical definition of “normal,” which leaves considerable discretion to the individual doctors to advise parents. As documented in this chapter, some doctors include social norms in their analysis of medical necessity. Meanwhile, there is little evidence that these surgeries result in genitals that look or feel “normal,” or that they can produce “normal” lives for the children affected.

A common goal of medically unnecessary surgeries on intersex children who are too young to consent is to help them conform to gender and sexual norms and expectations, thereby easing psycho-social stresses through childhood and adolescence.[217] Genital surgery is not necessary for (legal or social) gender assignment; while some intersex conditions are associated with health risks (and in some cases these risks are first identified because doctors notice a child’s atypical genitals), atypical genitals are not themselves a health issue.[218] There is no evidence that childhood surgery has anything to do with gender identity outcomes, even though it was assumed so for a long time.

There are sometimes health issues among children with intersex conditions that do, indisputably, require surgical intervention, such as the removal of cancerous gonads. All intersex advocacy groups—including The Intersex Society of North America, The Accord Alliance, interACT, AIS-DSD, The CARES Foundation, and OII—believe that such surgeries should be conducted.

Individuals with certain intersex traits may be exposed to an increased risk of gonadal cancer over time.[219] Medical evidence regarding both cancer rates and cancer risks for specific intersex conditions, however, is sparse—in part due to the rareness of the conditions, in part due to the common default to infant gonadectomies, and in part due to the conflation of cancer risk assessments with other aspects of DSD care management in some of the most thorough and prominent medical literature.[220] Gonadectomies are recommended for conditions other than those that cause intersex traits. However, evidence suggests that gonadectomy, even when it results in sterilization, can be recommended for very young intersex children on the basis of weaker clinical data than would prompt the same recommendation for non-intersex children, and in situations where irreversible interventions could be safely delayed.[221]

Practitioners Human Rights Watch interviewed expressed a range of views on what medical necessity might mean, and where thresholds should be set. Some said that even though they could draw a clear line between when surgeries were medically necessary and not medically necessary, they wanted to retain flexibility to advise on a case-by-case basis. As discussed in this report, many cited a lack of data regarding outcomes among people who did not undergo surgery as a limitation on their ability to advise parents to opt out of

surgery. However, none cited a similar hesitance to advise surgery based on the lack of outcome data showing any benefits from surgery.

Some studies—as well as doctors Human Rights Watch interviewed—link the perceived necessity of genital surgery on intersex children with questions about how the family or society might react to a child who does not undergo “normalizing” surgery. The 2016 update to the DSD Consensus Statement acknowledges that:

It has been hypothesized that body differences associated with DSDs may harm well-being….The high prevalence of normalizing surgery makes it impossible to separate the psychosocial impact of body differences and surgical management.[222]

In a 2017 commentary published by the Palm Center, Dr. M. Joycelyn Elders, Dr. David Satcher, and Dr. Richard Carmona, all former US Surgeons General, wrote that they believed “there is insufficient evidence that growing up with atypical genitalia leads to psychosocial distress,” and “while there is little evidence that cosmetic infant genitoplasty is necessary to reduce psychological damage, evidence does show that the surgery itself can cause severe and irreversible physical harm and emotional distress.” They said: “These surgeries violate an individual’s right to personal autonomy over their own future.” The three doctors concluded:  

Medical experts agree that more research is needed to determine the optimal treatment for children born with a DSD. In the meantime, babies are being born who rely on adults to make decisions in their best interest, and this should mean one thing: When an individual is born with atypical genitalia that pose no physical risk, treatment should focus not on surgical intervention but on psychosocial and educational support for the family and child. Cosmetic genitoplasty should be deferred until children are old enough to voice their own view about whether to undergo the surgery. Those whose oath or conscience says “do no harm” should heed the simple fact that, to date, research does not support the practice of cosmetic infant genitoplasty.[223]

For some providers Human Rights Watch interviewed, gender identity outcomes were the primary concern—that is, they wanted surgical success to be judged on whether the adult’s gender identity corresponded with the surgically-assigned sex. Others asserted that there was a need to establish functional genitals for children—and included assumptions of a desire for heterosexual penetrative sexual intercourse in their evaluation of proper function. Others argued that it was necessary to include psycho-social outcomes—including hypotheticals—in the analysis of whether to conduct otherwise medically unnecessary surgeries, thus blurring the lines of medical necessity. One urologist, who advises families on surgeries and conducts surgeries, told Human Rights Watch that despite it being part of his medical practice, he did not feel qualified to weigh in on the difficult questions about when to do surgery: “I am not a lawyer I am not a political philosopher and so I don't really feel like I have the ability to comment in an intelligent manner on who gets to make the right call.”[224]

Many of the practitioners Human Rights Watch interviewed struggled to cite clear justifications for performing such controversial surgery on a child, or expressed reservations or discomfort. For example, an endocrinologist on a DSD team, describing her reservations with how the medical community continues to manage intersex cases, said: “When we’re trying to force people into cultural normative, hetero-normative situations, there’s a high chance that we’re going to make some major mistakes and harm people irreparably.”[225]

In contrast, a surgeon on another team said:

It is a reasonable choice to not do surgery on your child right off the bat. It is also reasonable to do surgery right off the bat—because quite frankly that has been the standard of care for a long time. We're going to make mistakes but we want to be as above board as we can be.[226]

One argument many practitioners put forward during interviews with Human Rights Watch is that the public debate over intersex surgeries was too often lopsided to favor the voices of those who were unhappy with their surgeries. For example, a surgeon said:

I think when you were attempting to dramatically change a long-held standard of care you need to have a good reason to do that. And I think that…some of the adults have had horror stories—there are some impressive stories out there. That is a compelling reason to consider revising things. But what I think is missing from that is…the other side of the story of: This is a young woman or young man or old woman or old man or whatever who actually did choose to go with surgery or whose parents chose to go with surgery. And they're actually quite well-adjusted.[227] 

Over the years, patient advocates, journalists, human rights bodies, and scholars have sought (with almost no success) to document the experiences of intersex people who were happy with their early cosmetic surgeries and felt these practices should continue.[228]  

Two intersex people Human Rights Watch interviewed expressed that they were happy with the outcomes of their early genital surgeries. One of those, a man who had undergone surgery for hypospadias, said he felt that his surgery was done technically well and at the right time (in infancy) for him. However, he said, “I feel like I dodged a bullet.” He strongly opposed exposing children with hypospadias to the risks of surgery.[229] The other, a 20-year-old woman with CAH, said she was glad her parents made her “look like all the other girls” her age when she was growing up, and she had never thought about sensation issues because she felt awkward discussing her genitalia with her peers. She strongly supported parents conducting similar operations on other girls with CAH, and said that people with CAH, their parents, and their healthcare providers, should accept a 20 percent risk of negative physical outcomes from the operation.[230]

Some providers Human Rights Watch interviewed said they believed psycho-social outcomes needed to be considered in the surgery decision-making process—reflecting the hypothesis that “body differences associated with DSDs may harm well-being” mentioned in the 2016 Consensus Statement update.[231]

This narrative construing early cosmetic surgery on genitals as a preventative measure to avoid presumed psychosocial issues rests on a superficial analysis of cultural and social pressures rather than data. When put forward by surgeons, as opposed to mental health professionals, it is advanced by individuals who are not necessarily informed about sexuality, stigma, childhood peer relations, and bullying, and whose professional training does not necessarily enable them to account for these factors.  When presented to a parent trying to make a confusing decision about genital surgery, such perspectives can deliver messages of shame and stigma.

The weakness of the underlying assumptions is reflected in researchers continuing to call for data collection regarding the impact of the intact intersex body on families and society. For example, an article co-authored by 30 DSD healthcare providers reflecting on genital surgeries published in the Journal of Pediatric Urology in 2015 stated:

There is general acknowledgement among experts that timing, the choice of the individual and irreversibility of surgical procedures are sources of concerns. There is, however, little evidence provided regarding the impact of non-treated DSD during childhood for the individual development, the parents, society and the risk of stigmatization.[232]

Human Rights Watch asked providers to describe the information they share during consultations, as well as their methods of analysis and communications with parents of intersex children.

“How do we know that not doing surgery doesn’t cause harm?” one practitioner asked. She argued that certain outcomes—such as being able to stand while urinating—could be important enough to justify the risks and loss of autonomy caused by surgery. She articulated:

I mean, how do we know that a kid whose outer body looks more like a penis, his identity is a boy, and he can pee standing up—how do we know that that’s not much better for that kid even though the kid underwent a bunch of surgeries and may have some complications than having the same kid not even be able to stand up to pee? We don’t have the data on it, and that’s why I’m very hesitant to put a huge limit on this because until we have the data we’re not going to be able to say, “well, what’s the psychiatric outcomes in these patients and is that medical necessity or not?”[233]

Other practitioners linked the decision to do surgery on an intersex child or not with assumptions about gender identity and mental health outcomes such as suicide attempts. For example, one doctor explained: “The best data that's out there right now would suggest that gender dysphoria is present in roughly 3 percent of adults who have undergone DSD surgery.” He said: “That by definition means that 97 percent of people—they may not be perfect but they are at least doing OK.”[234] Reported rates of gender assignment rejection among intersex people in the medical literature, however, surpass this quoted figure of three percent—for almost every intersex condition for which there are data.[235]

This practitioner, a urologist who performs genital surgeries on intersex children, equated choosing not to do surgery on intersex children with setting them up for extremely negative psychological outcomes. He relied on an assumption that a child with intact atypical genitalia would experience similar stigma and negative mental health outcomes as a transgender child. He then cited data about transgender suicide attempt rates to make his argument. He said that if he were to abstain from surgery for sex assignment, it would result in “97 percent of [his patients having] gender dysphoria.” He explained how this puts him in a difficult position:

Think about that for a second. That carries a 40 percent risk of suicide. Not thinking about suicide. Suicide. Actually doing it, or trying to do it. That is an astoundingly large number. That effectively makes my gender kids that I see a more lethal condition if I screw it up than all of the cancers that I treat in small children. If I screw up the gender thing. ‘Congratulations, Doctor, you've just given these kids a 40 percent risk of potentially death by themselves.’ So that's a hell of a burden.[236]

He said the decision-making process should be based on information about psychological outcomes—for both child and parent: “What is utterly lacking here is the psychological cost on both the parent and the patient of growing up ambiguous. And I guarantee you that there are some areas [in the US] where [the child is] going to have a hellaciously bad childhood if [the parents] even think about it.”[237]

Another urologist argued that cosmetic surgeries on external genitalia can play a socially protective role. He explained:

The girl with the big clitoris—do we make it look good before puberty or do we wait? In a perfect world, no of course we'd wait. But it's not a perfect world and parents know that— parents say: look I'd love to live in a place with that kind body and not get any grief….[238]

He, like the other urologist, referenced transgender suicide data as a parallel:

From the transgender standpoint we could say ‘We're not going to do anything for these patients until they're 18, until they can consent’—and maybe people would understand that as a patient autonomy thing and we're not going try to screw anyone up. The problem is: transgender patients by the time they reach adulthood about 40 percent of them have attempted suicide, which makes it more deadly than testicular cancer. So that means the cancers that we treat are not as deadly as a diagnosis of a transgender issue.[239]

This doctor called these types of decisions “a gray area” and acknowledged that there were “societal” pressures at play. “But,” he cautioned:

Medicine does not exist in a vacuum. And if you have the eighth-grade girl who is essentially humiliated in front of her school who kills herself as a result of that and gets bullied and all that kind of stuff, how much of a gray area is it? If I told you we did this clitoroplasty on a 2-year-old and as a result she never got bullied and she never got humiliated and she didn't suffer from anxiety and depression and she didn't kill herself when she was in the ninth or tenth grade—well we did it for societal reasons. Now you could say it was purely society that did this to her. And I would say you’re right but we live in world where we're social animals.[240]

There are two fundamental elements that these arguments omit. First, while the fear of bullying and harassment of their children is a legitimate and palpable experience for parents of intersex children, the proposed surgical operations have never been demonstrated to prevent bullying or other ill-treatment. The 2016 update to the Consensus Statement acknowledges that “It has been hypothesized that body differences associated with DSDs may harm well-being,” but provided no evidence.[241] A 2017 paper published in the Journal of Pediatric Urology documented in follow-up with seven girls with CAH up to age eight who did not have surgery that “girls and their parents have not expressed significant concerns regarding genital ambiguity.” The authors conclude: “With these encouraging data at hand, we propose to formally address levels of anxiety, adaptation and quality of life during childhood, with an ultimate goal to assess long- term satisfaction and effects on sexuality through deferring genital surgery.”[242]

Second, regardless of these fears, children should have the right to negotiate these complex social dynamics for themselves as they grow, and decide when and whether to have surgery, instead of having these decisions forced upon them by others.

A father who opted out of surgery for his daughter with CAH said: “The world can be a hard place for people who are different and I am not naive to the fact that this could create some social difficulties for my daughter. However, I don't think the solution is to subject her to anesthesia and perform a surgery without her consent that's irreversible.”[243]

A mother of two intersex children argued that, “Parents are very suggestable—and when we feel like we have a situation we don’t know how to navigate, we’re going to do what the doctor says.” She explained that part of the complexity rests in that, “We aren’t inclined to think about our kids as humans who are going to be adults one day. We are consumed with protecting our child.” As a result, she said, “if a doctor says your child is going to have a really hard time growing up with genitals that look different and I can do this surgery that will make everything fine and they won’t remember it, you’re going to say OK.”[244]

On the other hand, one mother, whose 13-year-old son did not have surgery, said the child had never experienced any adverse treatment—even in situations when he had to disclose, such as when he wanted to opt out of physical education classes.[245] Another parent said a friend of her intersex son (who also did not have surgery) once asked her why her son “looked different down there” than other children. “I just said ‘that’s the way he was born,’ and his friend shrugged and went back to playing in the pool with him,” she said.[246]

Over the last 15 years, US lawmakers and school administrators have increasingly recognized that sexual and gender minority youth are a vulnerable population in school settings, and many have implemented policies designed to ensure all students feel safe and welcome at school. Currently 19 states and the District of Columbia had enacted laws prohibiting bullying on the basis of gender identity statewide.[247] While this is suboptimal coverage, it correctly identifies the government and school administrators as those who bear the responsibility to enact and uphold such protection. The Americans with Disabilities Act and other laws provide further protection from bullying in schools to intersex children in all 50 states.

Surgery to change atypical genitalia, by definition, changes the body to fit socially constructed norms of appearance.[248] Advice from doctors based on avoidance of bullying amounts to recommending a surgical solution for a social problem.[249] Some intersex people Human Rights Watch interviewed said a discussion of normality—including future sexual behavior that was expected of them—was part of the surgery and post-operative treatment they received. An intersex woman in her 60s in New York described how her doctors discussing how to be normal with her put her in “full buy-in mode.” She described it as thinking: “If I can have sex with men I’m normal, if I can get married I’m normal, if I can have kids I’m normal.”[250]

An intersex woman in California who confronted her doctors when she was 40 in 2000 about genital surgery they had conducted when she was 15 said the doctors’ initial response was: “But you’re fine. You look like a normal female.” She said: “They refused to listen to whether I had any sexual function or pleasure—they weren’t interested. They shrugged, said they didn’t see the point of discussing it because I ‘looked normal.’”[251]

Some practitioners told Human Rights Watch they draw on parallels to and principles from transgender care to inform how they counsel parents of intersex children.

A urologist whose clinic sees both transgender and intersex patients, said: “My clinic does not see a role—and I agree with this—for us performing surgery on transgender child patients.” He explained that he “would not even take a referral from a young transgender person for surgery until they had a note from a psychiatrist who'd been with them for a while and lived two years as their target gender with appropriate hormonal therapy from an endocrinologist.”[252]

An endocrinologist told Human Rights Watch:

I've made it my practice to tell every new XX CAH patient’s parent that the literature says that about 95 percent of XX CAH babies will grow up to have a female gender identity but about 5 percent, or 1 in 20, will have a male gender identity and that's about 10 times the rate of being transgender in the US [general population], which is about 1 in 100.

She explained: “No one can predict how you're going to identify when you grow up—and when the literature says it is unpredictable or even more likely… you have to emphasize that a lot.”[253]  

Asked whether it would make clinical sense to apply the principles of the transgender youth standards of care to intersex children, this endocrinologist said: “Yes, and surgeons will give you all kinds of reasons why it’s impossible…but you know I think none of them are based on actual evidence.”[254]

Care Principles for Transgender Children

The World Professional Association for Transgender Health (WPATH) establishes Standards of Care (SoC) for transgender people, and the document includes a special section on children and youth. In the SoC, WPATH recommends stages of appropriate interventions for youth, namely: First, fully reversible interventions; second, partially reversible interventions; and third, irreversible interventions. The stages are spread over a long period of time, and the intention of the policy is to avoid making irreversible mistakes—even though that may present temporary difficulties for some children and parents.

Examples of these interventions as WPATH recommends them are as follows:

Fully reversible: puberty suppressing hormones, for which adolescents may be eligible as soon as pubertal changes have begun. WPATH notes: Two goals justify intervention with puberty suppressing hormones: (i) their use gives adolescents more time to explore their gender nonconformity and other developmental issues; and (ii) their use may facilitate transition by preventing the development of sex characteristics that are difficult or impossible to reverse if adolescents continue on to pursue sex reassignment. Puberty suppression may continue for a few years, at which time a decision is made to either discontinue all hormone therapy or transition to a feminizing/masculinizing hormone regimen; it does not inevitably lead to social transition or to sex reassignment.

Partially reversible: Adolescents may be eligible to begin feminizing/masculinizing hormone therapy, preferably with parental consent. In many countries, 16-year-olds are legal adults for medical decision-making and do not require parental consent. Ideally, treatment decisions should be made among the adolescent, the family, and the treatment team.

Irreversible: Genital surgery should not be carried out until (i) patients reach the legal age of majority in a given country, and (ii) patients have lived continuously for at least 12 months in the gender role that is congruent with their gender identity. The age threshold should be seen as a minimum criterion and not an indication in and of itself for active intervention.[255]

However, the WPATH Standards of Care for transgender youth make an exception for intersex children, noting that, “Clinicians assisting [DSD] patients with treatment options to alleviate gender dysphoria may profit from the insights gained from providing care to patients without a DSD. However, certain criteria for treatment (e.g., age, duration of experience with living in the desired gender role) are usually not routinely applied to people with a DSD.” WPATH offers a problematic justification for the distinction: “One reason for these treatment differences is that genital surgery in individuals with a DSD is quite common in infancy and adolescence.”[256]

Advice Without Data

As discussed in this report, even after two decades of controversy and debate, there remains no research showing that early, medically unnecessary genital surgery is helpful to the intersex child. Nor is there data to predict gender identity outcomes with confidence in many intersex conditions—meaning that doctors are sometimes conducting sex assignment surgeries that the children will later reject.[257] As documented in this report, this can mean doctors give parents information about gender identity, surgical risks, and the reversibility of certain procedures that have no basis in medical literature.

Practitioners Human Rights Watch interviewed were aware of the particularly egregious cases that became bellwethers of the early intersex rights movement, and the larger controversies related to medically unnecessary procedures. For example, an endocrinologist on a DSD team told Human Rights Watch: “One of the surgeries that I think makes people very angry is the clitoroplasty, because it’s just an enlarged clitoris and there’s no function that you’re serving by making it smaller—you’re just treating the eye of the beholder.” She said: “Some of the patients who had clitoroplasties in the 80s have almost no clitoris. It’s almost like a female circumcision where they’ve taken the clitoris out—I’ve seen some of those.”[258]

However, while most of the practitioners Human Rights Watch interviewed acknowledge such procedures and their outcomes in the past have been horrific, many believe that surgical techniques have improved substantially, and continue to believe that the physician and parent has the right to enact similar procedures on children today.

For example, some surgeons Human Rights Watch interviewed focused intensely—if not exclusively—on cosmetic outcomes of their intervention, even while acknowledging that cosmetic outcomes are frequently unsatisfactory. Explained a surgeon: “Cosmetically it is a real challenge to do a good surgery on those kids and have something that parents and kid are going to be happy with 30 years from now ... none of them are easy.”[259] 

One practitioner explained that while she thinks “there's probably rare if any situations where surgery is absolutely necessary,” decisions about surgery “are complex enough that there needs to be some flexibility.” She explained: “I think that the better approach than having a ban [on medically unnecessary surgeries] would be to have clear guidelines, clear practice standards. I would favor general principles of care and make it very clear that the emerging data is in favor of not intervening.”[260]

Some practitioners’ explanations of why recommendations against surgery were problematic revealed limited understandings of gender. For example, an endocrinologist assumed that any intersex child who did not undergo surgery would need to be raised as “gender-neutral.” She explained:

I think we're stuck without any real science to say what that means as well as what it means to try and raise the gender-neutral child so you know what does it mean for someone to not be assigned a gender until they're two or three or five or whatever stage they really kind of figure that out.... If you don't make [a decision] in the newborn period it's a tough spot.[261]

This statement reveals a lack of understanding of what it means to delay genital surgery. Intersex children can be raised—and are being raised—as boys or girls without irreversible surgery.[262] Both doctors and intersex advocacy groups who oppose early surgery propose assigning a gender at birth (with the understanding that this may change) and postponing irreversible interventions until the child is old enough to participate in the decision.[263] None of the parents interviewed for this report who had chosen to delay surgery reported raising a “gender-neutral” child.

Discussions surrounding the irreversibility of procedures also produce disagreements among practitioners. For example, one urologist told Human Rights Watch that in his discussions of surgical reversibility with patients, he explained that clitoroplasties were not irreversible with regards to being able to transition to male later in life. He said:

There's nothing to support that if we leave the clitoris intact and it's almost a phallus, is it more likely that they'll become or that they'll identify as male. We have no information on that, but I would say that in either event it's not an irreversible surgery. So, for example one of the things I can tell you with a clitoroplasty to a degree is that if the 18-year-old comes back and I've done a clitoroplasty…and they say, ‘That was really unnecessary, I want to be the other [gender].’ I've done nothing that isn't reversible.[264]

This surgeon’s analysis, however, is flawed. His narrow focus on gender identity does not address the fact that a clitoroplasty can cause irreversible nerve damage and scarring, as well as psychological damage. Furthermore, contrary to this surgeon’s claim, clitoroplasties and other feminizing surgeries are widely recognized in the medical literature to be irreversible.[265]

To suggest that they are reversible is misleading for multiple reasons. Because nerves and tissue that have been cut away by these procedures cannot be put back, “reversing” the procedure through later surgery is not possible. Additionally, for clitoroplasty patients who do grow up to reject their sex assignment, available techniques for phalloplasty (as chosen by some transgender men) can have significant complications and cannot fully replace what is removed in a feminizing surgery—and these techniques may not work as well on a person who had clitoroplasty as a child as they will on a transsexual man who never had such surgery.

Parents who contacted Human Rights Watch as part of the CARES Foundation campaign explained their decision to conduct clitoral surgeries on their daughters.

For example, a mother with CAH who has two children with CAH said she opted for genital surgery—including operations to reduce the size of the clitoris—on both of her daughters. She emphasized that the surgery was “not for vanity,” but rather “just about making sure we keep these children healthy mentally and physically and making their life easier.” She said she feared her daughters’ enlarged clitorises could interfere with urination and cause UTIs, interfere with “sexual function” later in life, or be the trigger for bullying. In her own experience, her parents had not elected to conduct genital surgery on her. She said she was unaware whether her genitals appeared to be atypical because she had never seen another woman’s genitals. However, she felt humiliated and faced teasing because of body hair and enlarged hands—two traits unrelated to her genitalia.[266] 

With regards to the operations on her daughters being reversible or not, this mother said her only consideration about irreversible operations was whether her child grew up to identify as male. She explained: “My only fear when deciding [about surgery] for my children was: ‘what if my child grows up to be transgender?’ But I knew the statistics were in favor of that. And I have two very girly girls.” She said the urologist who performed the surgeries told her an enlarged clitoris “could cause problems during potty training,” and conducted both operations when the girls were 18 and 26 months old, respectively. Asked if the doctors discussed how gender identity developed, she told Human Rights Watch: “There’s no way she’s going to be transgender. They spoke statistics…There's no proof that there is a higher transgender population amongst our community than there is amongst the general population.” She said: “Anyway, there is no penis on a little girl.”[267]

A mother who elected genital surgery on her daughter with CAH in 2011 in New York told Human Rights Watch the urologist explained to her that there were controversies surrounding the operation, but that all surgeries carried risks. “She had a large clitoris that was reduced, but I don’t know what else was done,” she said, explaining she and her husband consented to a set of surgeries she could not recall. “For me and my husband there was no question. It was a birth defect, and we would fix it. I would have a mole removed as well,” she said. She said the surgeon told her there were risks in not doing surgery, including UTIs, and that the potential complications the surgeons discussed focused on fertility and whether her menstruation would flow normally, but there was no mention of other possible issues. “If my daughter had a huge goiter on her face, I would have it surgically removed,” the mother said. “She definitely never had a penis. She couldn’t pee through it. I guess if she wanted to identify as male later, I’d be supportive, and they could do a skin graft to give her one.”[268]

These parents seem to have made their decisions based on inaccurate information. There is no reliable evidence that genital surgery will reduce rates of UTIs in children with CAH—in fact, surgery may increase UTI risk.[269] According to the most recent data in the US, the rate of children between 13 and 17 who identify as transgender is one in 137.[270] Studies have shown that among children with CAH, gender dysphoria occurs in one out of every 10-20 children raised as girls.[271] For female-assigned children with CAH who undergo clitoral reductions and later identify as male, surgery to construct a phallus, should it be desired, becomes significantly more complicated than if the clitoris had remained intact.[272] And as documented in this report and other literature, surgically assigning a sex carries with it significant  ramifications that extend beyond an individual’s satisfaction with how their genitals match their gender identity.

Another point of disagreement among practitioners Human Rights Watch interviewed was that of hypospadias surgery. Hypospadias can cause the urethral opening to be somewhere other than the tip of the penis, such as further down on the glans, shaft, or close to the scrotum. Surgery to treat hypospadias attempts to move the urethral opening to the tip of the penis, and it is often justified for social or cosmetic reasons—for example, so a boy can urinate standing up. One practitioner Human Rights Watch interviewed said of hypospadias surgery: “Since it’s so common…it’s better to do it.”[273] Another noted that “there are very high complication rates.”[274] Another practitioner said: “Is that an urgent surgery? Perhaps not. But it's a relatively benign procedure.”[275] In fact, a hypospadias surgery sometimes requires several additional surgeries throughout childhood and adulthood, to continually manage the scar tissue and other effects created by the initial surgery.[276]

When Parents Push for Surgery

Parents come in stressed—they’re not letting grandparents change diapers because they don’t want them to know. It’s a flaw not only in how we approach parents, but it’s a flaw in our culture.

A gynecologist, March 7, 2017.

It’s sort of shocking and surprising to have the child look different than what they expect. It's just the initial instinct—just, like, fix it.

A urologist, February 6, 2017.

Practitioners Human Rights Watch interviewed recounted the deep concerns parents of intersex children express upon discovery of intersex traits at birth, or referral to their clinic. Some practitioners cited broad parental concerns about how the child would grow up—ranging from gender identity outcomes to fears of homosexuality. For example, a gynecologist explained: “We have families who are very concerned that their child is gender non-conforming or has homosexual traction— because it’s not OK in their community.”[277] But, she said, the majority of parental concerns are more immediate and practical: “We have families who are terrified of having their daughter’s diaper changed at church or by a babysitter.” [278]

An endocrinologist who works with a DSD team told Human Rights Watch parents fears about their children’s genitalia often drive the decision to select surgery. “The phrase ‘middle school locker room’ gets tossed around quite a bit,” he said.[279] As noted in this report, parents who found their way to peer support groups often found their fears greatly relieved when they talked to more experienced parents, and learned useful strategies for dealing with the situations they dreaded.

Another endocrinologist on a different DSD team said the most common fears she hears from parents with children who have atypical external genitalia relate to diaper changes, bathing suits, and, for boys, being able to stand to pee. “A lot of people just will not let anybody else change their child's diaper or put their child in daycare or preschool until they've had surgery,” she said.[280] This endocrinologist said such families tend to focus on the intersex traits thinking “this is a medical problem, we just need to fix a medical problem,” an observation we heard from other practitioners as well. She explained: “I think that they're very reluctant to acknowledge things beyond the medical side of it. Our endocrinologists and psychologists—we’re not reluctant to bring those [non-medical] things up with families. However, I really do think most parents of infants still see surgery as a quick fix option no matter what we say.” She said her experience with intersex teenagers draws a sharp contrast to her cases of intersex infants:  

Teenagers are co-questioning things with their parents. The teenagers have to process it. So the parents cannot get away with a lot of denial. For example, if you see a 15-year-old with a new diagnosis of Androgen Insensitivity and they have to go to school and talk about why they're not getting periods and think through all of this, the parents can't just box that away in the same way that they can a 2-year-old.”[281]

Many practitioners said that they empathize with parents’ distress, and some found ways to help them understand that surgery was not a guaranteed solution. “We certainly have parents that really really really really really just want it,” said another endocrinologist, talking about cosmetic surgeries. She described her team’s methodology for engaging parents on the issue: “You have to start really slowly and help parents imagine what it would be like to go through without having surgery and then talk about the disadvantages of surgery—and they have to make their own decision,” she said.[282] “First, parents have to understand risk-benefit—a lot of times people don't understand that kind of thing. What's the risk of surgery? It's pretty high. So you're going to end up probably doing a surgery like that which is optional or—that's not the right word—but you know, it's not medically necessary.” She said she tries to emphasize to parents: “And if all the [body parts] work, you know, the kid’s not going to be necessarily showing their parts to anybody else.”[283]

One urologist Human Rights Watch interviewed offered an example of a case in which he convinced parents to not opt for genital surgery. The patient was an 8-year-old with CAH whose genitals were, according to the doctor, “amazingly virilized.” According to the doctor, “in talking with this kid, they very clearly did not fall into one gender role or another…. So my very strong recommendation to them actually was ‘we should really think about putting in a hormone blocker in her and just [give] her some time.’” The doctor explained to Human Rights Watch:

From my perspective, [a hormone blocker] is never a wrong answer because you buy time. If you look at the transgender kids—because there really isn't any data on this in DSDs—just putting on a hormone blocker actually drops her suicidality by about 80, 90 percent. So to me this is a no brainer. You know moving ahead with a massive clitoral reduction on this kid … who may or may not want to be a boy or may or may not want to be a girl—that's an irreversible step. And to me that is a horrible disservice to this kid. [284]

The doctor reported that, after following the advice, “kid and parents are both very happy with that decision.”[285]

Other practitioners spoke of cases when they felt they needed to reject parents’ demands for surgery. One endocrinologist explained that while such instances were rare, “Sometimes we have to say: ‘I'm sorry. We're not going to do that here. You can go to another surgeon if you would like to do that but we don't think that it's the right thing for your child at this time.’”[286]

The Desire for a “Normal Life”

A gynecologist who works on a DSD team recounted a case to Human Rights Watch in which an infant came to her clinic in 2015. The child had XX chromosomes and atypical genitalia; genetic tests had revealed the child carried an SRY gene, which is typically associated with male sex determination.

The mom really wanted to know ‘is this a boy or is this a girl?,’” the doctor recounted. There was a real emphasis that she had been told this is a boy because of the SRY gene and because there was some testosterone production.” During the first visit, the mother asked to meet a surgeon. “‘But they told me it was a boy,’ she said to us. And our whole team was just not prepared to deal with this. And then she asked, ‘When are you doing my surgery? When am I gonna meet the surgeon?’” The doctors told her she would need to wait, per the team’s policy, until the child was six months old, for surgery. They referred her to a support group for parents, and she persisted to find a urologist who was willing to do the surgery immediately—operating on hypospadias and removing the child’s gonads.

The gynecologist told Human Rights Watch:

I had long conversations with this mom and it was very interesting because she said, ‘I’m aware that my baby may really, really be angry with me later on for what we did.’ And she had had a lot of conversations with other moms from the support group. But she said: ‘But I want him to have as normal of a life as possible when he’s in high school. I want him to have as normal of a life as possible.’

The gynecologist explained: “As a physician, I felt like this family was making really informed decisions. This was not a family like in the old days where the doctor would say ‘this is what we need to do’ and then they would do it.” She said: “They had seen and heard the alternate arguments against surgery, and had taken everything into consideration and made this decision with a lot of angst.”[287]

An endocrinologist told Human Rights Watch: “I understand the impulse for a parent to create something that looks normal—or at least normal according to a surgeon—at birth before the kid knows anything about it. I follow the logic pattern, but you have to run it against risks.”[288] He said: “It’s important to be clear that a certain percentage of the time, something does go wrong and you have to do a re-op, and there’s a loss of sensitivity. So then the do no harm becomes: don’t do anything. What problem were you solving with surgery anyway?”[289]

Other practitioners gauged their own ability to interact with parents based on the parents’ socio-economic and cultural backgrounds. Explained one urologist:

You have to measure and read the parents first. If they come in with eighth grade educations and their pastor is with them and the kid has a horrible heart defect but also has a slightly misshapen penis but all they're fixated on is the penis, it's a very different conversation than 30-year-old professionals who come in from a more cosmopolitan area.[290]

It is difficult to reconcile such views with human rights law and principles of medical ethics suggesting that the socio-economic, education, or religious background of parents should not be a deciding factor in whether a surgeon listens to them or counsels them one way or another—or whether a child is cut or not.

Another urologist said that in her experience, parents advocating strongly for surgery was rare. “I would say the majority of the time people aren't really pushing,” she said.[291] Some parents, she explained, do not understand the function of surgery—so providing detailed information about all aspects of the condition is crucial. “[Some parents] think that making the anatomy look more typical would improve fertility,” she said. [292] A mental health provider on a DSD team told Human Rights Watch: “Particularly in the last decade of this work, I feel like families in recent years say: ‘OK, we get this, we understand how this could happen, we just want our baby to be happy productive human being, we’re comfortable with a wait and see ... most of the families that we deal with deal very well with the info.”[293]

Practitioners told Human Rights Watch they observed a general trend of parents being better informed about intersex issues, and their child’s possible options for healthcare. Still, when it came to providing parents with information, some expressed trepidation about parents being overwhelmed by too much information, or persuaded by various arguments they read on the internet. One urologist told Human Rights Watch: “Sometimes parents will come in and say, ‘I read that you guys were genital mutilators.’”[294]

An endocrinologist said: “I definitely think there's a higher level of knowledge in most parents than before…. I think we have a lot more parents reading about what all this means and really coming to us with the stickier questions.” But, she noted, there remains a gap: “It's kind of hard for people who have no idea about gender and gender identity—if they've never even heard those concepts—to get to that point it takes several sessions of sitting down and talking with family.”[295]

One urologist told Human Rights Watch about a case in which, in his view, fully-informed parents persisted with their demand for surgery on their child:

 

It’s a really well-educated family and very much gets the issues involved and very strongly wanted to go ahead with a clitoroplasty, vaginoplasty, labioplasty. And so after three or four times meeting with them and going through everything with them and doing exhaustive consultations it was clear and apparent that they had a well-thought out rationale. They were acting in what they felt were the best interests of their child. And again, those are surgeries that are reasonable options per current standards of care. So we did the vaginoplasty ... and she did great, and I explained to them that there is a at least a 25 percent chance she will have a long-term complication when she hits puberty. They are aware of that. They understand that, they are looking out for that. [296]

A mental health provider emphasized how DSD teams should consider the immediate challenges parents face, by “[helping] them to develop strategies on how they can communicate with other people in their inner circle, and how they can speak to extended family about their child.” He warned: “Unless we do, that pressure to ‘fix’ what is observable is very powerful.”[297] He explained that he counsels families through their fears, attempting to parse out that which is realistic from that which is not. “But there will be families for whom their reality—not only in their head but in their communities—is such that unless something is done they will not be able to parent this child,” he said. The practitioner cited the “middle school locker room” fear as an example, saying he asks parents whether they actually showered naked in front of their peers or know that it is mandatory in their local schools. “There was a time [when that was common] perhaps but it is much less so now. And certainly children can avoid having to do that for so many reasons that do not draw attention to themselves,” he said.[298] Indeed this is a commonly-cited fear[299]—though not necessarily one based in reality.[300]

Practitioners Human Rights Watch interviewed believed they played a crucial role in providing information and counseling to parents who were deciding whether to pursue surgery on their children or not. As one urologist put it: “There's no such thing as a value-free consultation. It can't be done…. And there's no question that at the end of the day we [doctors] are not the ones that make the surgery decision. But I would also argue that we're critical to it.”[301]

Practitioners expressed mixed views regarding how to balance a child’s rights to make decisions about their own body with parents’ rights to make decisions for their children. “You have to be careful with the parents’ wishes or it may not be in the child's best interests,” an endocrinologist on a DSD team told Human Rights Watch. He said:

We have parents that really strongly advocate one approach, and they're well-meaning most often but they're coming at it from a goal that they have and the key is it should be focused on the child—and it is going to be many years before [the child is] able to put their two cents in there.[302]

This endocrinologist told Human Rights Watch he thinks “there's general agreement that if it is possible to defer things until the child can participate in that decision—that is the best and desired goal,” and reiterated, “when we can defer it to that point in time, that's what should be done. I think that could be easily put into a statement of policy that would be supported and it wouldn't really be very controversial.”[303]

Others, however, disagreed.

A practitioner on a DSD team said: “My feeling is that these are decisions that need to be made by the families with all the information that they can have, including the information about people possibly having nerve damage and possibly having future anger.”[304] Another practitioner said: “Different parents and different patients are coming at this from a variety of different cultural and belief angles, so I don't think you can make a one size fits all policy that will cover everyone.”[305] He said doctors are responsible for informing parents, but parents retain the right to choose surgery based on their beliefs: “The onus becomes on the provider to make sure that we really lay out all the options and make it abundantly clear that we're not rushing into anything and that you take the time that you need to make the right choice for your kid.”[306]

Some practitioners Human Rights Watch interviewed about their informed consent practices focused on the procedural elements of how they counsel parents.

For example, a urologist at a DSD clinic explained that he tries to “meet families on their own terms” and that he treats families for whom, he said, “clearly not doing surgery is not an option for [them].”[307] In such cases he proceeds to “discuss what the surgery entails so that you know what you're getting into and what you're getting your child into. And once you have that knowledge other than just ‘fix my baby’ and realize that this is going to be a lifelong issue.”[308]

A mental health provider, referring to parents’ frequent desire to have seamless lifelong positive outcomes, said: “The surgeons I work with make no promises and they point out that there are risks.”[309] A urologist on a different DSD team said they try to steer the parents’ narrative away from “Hey, can you fix this?” She said: “I don't think that for anything elective it makes any sense to make an immediate decision. We try to explain that there is no urgency…. So the first step is just letting that sink in with the family because I don't think it occurs to most of them that not having surgery is even an option.” Her clinic presents surgery as an option by giving examples: “We say: ‘Here are some of the reasons people choose surgery. Here are some of the reasons people choose not to.’” However, she observes: “I don't think there's any way that we can be totally non-biased because we're medical people and we talk in a certain way.”[310]

A mental health practitioner on a DSD team in New England explained her intervention in a case where she assessed that a child who had CAH could not assent to surgery, but rather only understand that her parents wanted it for her. She said: “I told the surgeon that the kid could not possibly understand what was going on.” The father was particularly concerned about his daughter being vulnerable to sexual assault because of an intellectual disability, and that assault risk being magnified by her atypical genitalia. The DSD team eventually convinced the parents to postpone surgery and work on self-defense and assault-prevention skills. But, the mental health provider said: “The team was just going to go along with it unless I intervened.”[311]

The same mental health provider also assessed a 20-year-old woman with CAH. “She wanted to have penetrative sex, and I talked to her extensively and I feel comfortable that she can move forward and consent.”[312] The problem, she explained to Human Rights Watch, is that some providers believe they are providing sufficient—and sufficiently clear—information, while parents fail to comprehend what is happening. She said:

I’ve seen surgeons present to families in a way they couldn’t possibly understand, and then not present doing nothing as a viable option...and then think that they went through a full informed consent process. And clearly, they had not. They presented it basically as: ‘You can medically neglect your child, or you can do surgery…’ and used words that I didn’t even understand, then gave them a form to sign and they want to do it because he has a white coat on and they’re scared.[313]

One gynecologist who works on a DSD team told Human Rights Watch about how her team manages cases of patients with CAH: “Previously the dogma with CAH was a feminizing genitoplasty to minimize the clitoris,” she said. “Now for families, it depends—we go through the entire range of issues and try to get the parents to not focus on the clitoris.” The doctor explained:

We really go through everything. We lay it out there, we tell families: this could be considered torture and shouldn’t be done. We use the word ‘torture’ in our counseling and refer parents to the United Nations. We say: leave it alone, wait…address the clitoris later.[314]

But the discussion of human rights issues during the decision-making process is not standardized across clinics and practitioners. An endocrinologist on another DSD team said: “In general, we could do a better job. The kids’ autonomy does not come up as much as it should.” She explained:

We talk about the cosmetic surgery and we try to separate out the pieces that we feel might be more medically necessary—like proper urine flow or a kid with a very high risk of cancer—from the cosmetic piece, and try to help families think about those separately. I don't think anybody overtly says ‘this is a high-risk procedure’; the surgeons do quote complication rates.[315]

Of the practitioners Human Rights Watch interviewed, there was considerable disagreement about whether it is doctors or parents who drive the decision about surgery.

An endocrinologist who treats intersex adults said:

It’s still the case that when parents really insist on it, surgeons probably do the operation. Most urologists may have backed off their earlier position of overtly trying to help parents fit their kids into society, but if parents push for [surgery], they’ll likely get it.[316]

He said that it was important not to use surgical operations to address social issues—and that doctors could use their influence over parents to encourage them to think differently. “The pediatricians are in a position of power. And if it’s an issue of parents being scared, that is the problem that has to get solved,” he said. “It’s not really a matter of if you do surgery—that doesn’t make any sense, that’s not solving anything,” he said. “There are no data that it’s solving anything, and there’s ample evidence that people who underwent the surgery overwhelmingly think that it shouldn’t be done.” The doctor insisted: “If the issue is that parents want their kids to conform, they have to take a step back and relax. And who’s supposed to say that to them? The pediatricians. Who else is going to have the credibility to do it?”[317]

Others disagreed. For example, one gynecologist argued:

I understand the human rights principle of a child choosing—I also understand that parents choose a lot of things for children to help raise them in the best way that they can. And this woman who had the baby with very ambiguous genitalia who told me ‘I want him to have as normal a life as possible in high school,’ you know, ‘I want him to hang out with his friends and have a penis’ and all this—I get that. And I think until we have more evidence, we can’t tell people they can’t do that.[318]

This approach fails to draw a distinction between the kinds of decisions parents routinely make for their children, and decisions about a controversial surgery that has irreversible lifelong consequences.[319]

VII. The Positive Role of Peer Support Groups

International consensus statements since 2006 have recommended putting parents of intersex children in touch with peer support groups.[320] The World Health Organization recognizes that “treatment involves more than routine medical diagnosis, hospitalized care, or even the prescription of drugs,” it also involves “support from family members, peers and fellow patients.”[321] However, despite the wide availability of support groups for nearly every condition, it can be difficult for people with certain stigmatized conditions to learn about and reach out to these groups—including people with conditions that cause intersex traits. Typically, parents’ access to support groups depends largely on individual practitioners’ networks and opinions.

“I know there are so many other girls out there with my DSD and I feel like—it’s not their fault, it’s the doctors,” a 14-year-old intersex girl told Human Rights Watch. “They’re supposedly experts in this field, they should know the resources and the support groups.”[322]

Providers Human Rights Watch interviewed reported that they referred parents to support services—albeit in a range of formats. Some referred to established support groups such as the CARES Foundation[323], AIS-DSD Support Group[324], or the Accord Alliance.[325] Others preferred to refer new parents to other parents within their own clinic’s network; some clinics have parent volunteers participate in the consultation process on all intersex cases automatically. Some providers told Human Rights Watch they could not recall any of the names of the support groups they refer to, but that they routinely refer parents to websites such as www.sickkids.ca, a website run by the hospital at the University of Toronto, or www.dsdfamilies.org.[326]

A practitioner on a DSD team told Human Rights Watch: “Sometimes it's helpful to have parents be able to identify with other parents of similar children because there's a component of a shared journey—that they have the same types of questions.”[327] A mental health provider on a DSD team explained that he discusses “peer support in very general terms” with parents. He explained: “I really try wherever I can to draw similarities between this condition and other conditions with the hope that the parents are picking up that they are not alone.”[328]

Peer support can have emotional and practical dividends for parents and children. A mother who described herself as a “very conservative Christian” told Human Rights Watch that, “One gift is that because of this child, I’ve had to become more accepting.” She said she was raised to understand the world as “black and white” and “now I’m not willing to accept that as true anymore.” She said it has been the transgender community in her city and other parents of intersex children who have helped her, “guiding me to the right counselors, the right doctors, the right medicine, and all I can say is thank you.” She said: “Jesus was here to love people. And a surgeon should not play God with a baby.”[329] Said a father of an intersex infant: “For us, it’s really only our faith that makes us OK with everything that is happening. Because we know that God created [our daughter] and we know that he has a purpose for her and that he knew this was going to happen.”[330]

However, despite such reported rates of referral from doctors, many parents told Human Rights Watch that some of the doctors they visited did not help them find support resources. Parents recounted a range of experiences with regard to how they found support groups relevant to their child. While some were referred to resources as part of the care and advice they received for their child’s condition, others were told bluntly that no such resources existed.

The parents of a 1-year-old intersex girl in New England said they asked repeatedly over the course of several months for connections to counseling and community groups: “As we were processing this news, we asked are there other people who have kids like this, or adults like this? Can we talk to somebody,” the mother said. “The doctors said yeah yeah yeah, and week by week we asked for resources but they only sent us medical journals, and the social worker finally pointed us to the sickkids website.”[331]

The parents of a teenager with an intersex condition on the west coast told Human Rights Watch that while their daughter’s diagnosis was delivered within weeks of her birth, and they decided—on the advice of three separate medical teams—to go forward with gonadal surgery at 4 months, they were never referred to support groups or other parents of a child with the same traits. It took them nearly a decade to identify a support network for themselves and their daughter. “This is a very urban, liberal place—you wouldn’t think it would have taken 9 years for us to get hooked up with a support group, but it did,” the mother said. “And the only way we got hooked up was because a woman with the same condition had an article about her in the newspaper and I occasionally Googled our daughter’s diagnosis.”[332]

A mother on the east coast said that when she asked the mental health provider on her daughter’s DSD team for parental support resources, the provider responded: “I don’t know why you would want anything like that. This isn’t cancer—this isn’t something you’re going to have to deal with forever.” A year later the mother found a support group on the internet. “I knew that this was a situation where people would have found each other. This may not be very common, but there are certainly others out there.”[333] Others felt marginalized by their choice to not elect for surgery on their children. “I realize that we are in the minority of parents who decided not to do the surgery,” said one father, “but instead of the doctors just saying: ‘OK well good luck,’ it would have been nice to know like there are other families out there.”[334]

Regardless of how parents made their way to support services, those Human Rights Watch interviewed universally cited the experience as life-affirming and helpful for both them and their children.

“It’s amazing to know you’re not alone,” said one mother. “It’s amazing to be in a room full of people ... to be able to hear and learn so much from other people’s experiences.”[335] Another mother explained:

When we take our kids to support group meetings she comes alive—they get to meet other people like them, they tell us they are so happy. For [our daughter] it has been life-saving to go to support groups. I was afraid she was going to turn her psychological pain from the surgery inward and become a cutter as she grew older, I was afraid she was going to be really depressed—and the support group made all the difference.[336]

And for others, peer support from other parents made a practical difference in how they advocated for their children during ongoing medical care—a crucial tool in helping prevent trauma and feelings of shame in their children. One mother said: “It was because of the support group that I knew I could limit the people in the room for genital exams. I knew how to advocate and ask the purpose of each person and limit it.”[337] A mother of a 6-year-old in California said: “I asked the parents group whether I should tell her daycare providers about her condition, and they advised only if they need to know.” She said: “She looks pretty typically female to a non-medical eye so I didn’t tell them.”[338] Another parent said she found reassurance that there was a network of adults who could offer practical advice: “I’m a little more worried about biology class in junior high—especially when they do the class activity of skin scraping for chromosomes. But the parents group has advice on how to talk to teachers about it.”[339]

A 40-year-old intersex woman in California who works as a mental health provider said: “Most parents fear that their child will not be loved. That future partners won’t come along if they don’t do something now to make them look a certain way.” She explained: “Parents need to know that that’s not true—these people will be loved.” She said she believed her parents tried to help her when she was a child, but they were operating out of fear and shame. “I felt like I was being treated like I was on fire, and they were going to throw water on me because I was on fire,” she said. “But all that time, they didn’t realize I was drowning.”[340]

A 36-year-old intersex adult in Texas who discovered her condition when she was 17, said: “The one thing I am grateful for is the support group. I looked them up because on one doctor visit I remember hearing the word androgens—and I went home and looked it up online.” Of her first experience at an annual national gathering of intersex people, she said:

It was amazing, being able to have people to relate to who had similar experiences…. It was great to have that because I felt so alone for so long. I remember seeing the babies going around and thinking: it’s so great that they’re already here, that they’re going to grow up with this information—so they don’t have to feel ashamed and alone.[341]

Another intersex adult described a similar bond among participants despite the group including people with a range of traits and diagnoses: “We have this connectivity because we were made to feel ashamed and alone.”[342] For others, the catharsis moved them away from focusing solely on the medicalized condition. “It took going to two support group conferences for me to realize it’s not about what your condition is. Everyone is born with weird conditions that they may never know about, or genetic abnormalities,” an intersex woman in New York said.[343]

Intersex adults said accessing support networks was a crucial part of their gaining confidence, combatting shame and stigma, and accessing information. Asked what the cohesive element of the group was, an intersex adult told Human Rights Watch: “It was shared feelings of isolation, of feeling like you’re the only one, and realizing that doctors have been lying to you and you’re not the only one!”[344]

A mother of an intersex teenager said that the fact that it took her several years after her daughter’s diagnosis to receive a referral from a practitioner to a support group indicated to her that, “There’s a perpetuation of the shame through discouraging a mom like me from getting together with other moms and talking about this—it sends the message that I should be more ashamed of this than I am.”[345]

Parents told Human Rights Watch that while there are the struggles in raising children with atypical and complicated bodies, peer support and accurate information helped them.

“I feel like my mind has been stretched by this,” said the mother of a 6-year-old. “It’s great to look at the world this way. I had no clue this existed—I knew girls were XX and boys were XY and that’s what happened for everyone. And now I know that’s not true.” She said: “You have to look at it as the blessing that it is—there’s not a set path, and I think just realizing that really opens you up to what matters—that your kid is happy and healthy. Enjoy them.”[346]

VIII. Legal Standards Regarding Intersex Children

Human rights standards regarding the rights of intersex people have evolved rapidly in recent years, with UN human rights authorities for the first time taking up the issue in country and thematic reviews.

In 2013, the World Health Organization (WHO) publicly opposed early genital surgeries on intersex children in its report, “Eliminating forced, coercive and otherwise involuntary sterilization,” stating: “Intersex persons, in particular, have been subjected to cosmetic and other nonmedically necessary surgery in infancy, leading to sterility, without informed consent of either the person in question or their parents or guardians.”[347] In 2015, 12 United Nations agencies, including WHO, released a joint statement condemning “unnecessary surgery and treatment on intersex children without their consent.”[348]

In 2015, Malta became the first country in the world to legally ban non-consensual medically unnecessary surgeries on intersex children. Under the heading of the “Right to bodily integrity and physical autonomy,” Malta’s law states:

It shall be unlawful for medical practitioners or other professionals to conduct any sex assignment treatment and/or surgical intervention on the sex characteristics of a minor which treatment and/or intervention can be deferred until the person to be treated can provide informed consent.

The law specifies that it is illegal to perform a “medical intervention which is driven by social factors without the consent of the minor” and that in cases where the child requests surgical procedures, the government must “ensure that the best interests of the child as expressed in the Convention on the Rights of the Child be the paramount consideration.”[349]In addition to the surgeries being a violation of rights to bodily integrity and health, they deprive children of their right to form their own identity as they develop into adults.

International Human Rights Law

Torture and Other Cruel, Inhuman, and Degrading Treatment

The United Nations Committee Against Torture, the monitoring body for the Convention Against Torture (CAT) has condemned medically unnecessary non-consensual surgeries on intersex infants six times.[350] The United States ratified the treaty in 1994, and is under CAT review in 2017-18.

The committee’s critiques ranged from concerns over “cases where gonads have been removed and cosmetic surgeries on reproductive organs have been performed that entail lifelong hormonal medication without effective, informed consent of the concerned individuals or their legal guardians,” to cases in which “intersex children are subjected to unnecessary and irreversible surgery to determine their sex at an early stage.” In a 2013 report, the UN Special Rapporteur on Torture noted:

Children who are born with atypical sex characteristics are often subject to irreversible sex assignment, involuntary sterilization, involuntary genital normalizing surgery, performed without their informed consent, or that of their parents, ‘in an attempt to fix their sex,’ leaving them with permanent, irreversible infertility and causing severe mental suffering.[351]

The World Health Organization in 2014 also opposed medically unnecessary non-consensual surgeries in a statement joined by six other UN agencies.[352]

Practitioners in the United States interviewed by Human Rights Watch expressed mixed views on whether medically unnecessary non-consensual surgeries on intersex children could in some situations amount to torture or ill-treatment.

One endocrinologist on a DSD team said the fact that so many UN bodies had come out against medically unnecessary surgeries was “a sigh of relief for me because I find it helpful to say: ‘Look, I have some backing for what I say to parents.’” She said: “It’s a really powerful tool when you're talking about surgical decision making. I don't know whether many physicians would ever say that to a family—probably not the surgeons.”[353]

Others were more conflicted.

“I think that for the most part the UN is trying to do the right thing,” said an endocrinologist on another DSD team. But, she said:

It may not be appropriate to say ‘absolutely never.’ Every patient has so many different things that are going on with their particular case. I can't think of a case right now where that would be applicable but I don't want to be the one that says ‘never’... I'm just never comfortable with ‘never’ ... I don't know. I honestly can't think of a case where I would be likely [to recommend a medically unnecessary surgery]. I mean, ‘no’ would be the right answer most of the time—probably all of the time—but I don't want to find myself in a position one day of: ‘Well this is really important to have done.’ But I can't imagine one either.[354]

Others described how they analyzed torture standards that differed from the definitions used in international human rights law. When asked whether he agreed that medically unnecessary surgeries can be construed as torture, one mental health provider who works on a DSD team replied:

You could sort of say that but then I'll have a urologist who says: ‘but this is what I do, this is what I was trying to do.’ And in the medical community, we encourage you to spend all of these years in medicine and going to surgery and fellowships to hone your skills. It's always hard to say to the parents that what they are asking for—genital surgery—is, beyond the pale, tantamount to mutilation of the child.[355]

This practitioner expanded his analysis to critique the interpretation of medically unnecessary non-consensual surgeries as torture by suggesting that in order to meet the threshold for being torture, an act must be conducted with intent to cause harm. He argued: “When there are statements equating surgery to torture—now torture is an interesting word … there has to be intention. There's the intention to harm somebody. I mean if someone had to prove in a court of law that the intention of doctors was to torture children it just doesn't hold up.” [356]

In contrast to this practitioner’s assertion, in a 2013 report, Juan E. Méndez, the UN Special Rapporteur on torture and other cruel, inhuman or degrading treatment or punishment, explained:

Medical treatments of an intrusive and irreversible nature, if they lack a therapeutic purpose, constitute torture or ill-treatment when enforced or administered without the free and informed consent of the person concerned. This is particularly the case when intrusive and irreversible, non-consensual treatments are performed on patients from marginalized groups … notwithstanding claims of good intentions or medical necessity.[357]

Others said they felt morally compelled to conduct surgery rather than allowing patients to seek other, less skilled, providers

One urologist told Human Rights Watch: “If I say to a parent: ‘Look, the UN said I couldn't do any surgery on your kid’—that could be a problem. I'm really against that.”[358] Another urologist explained that he, as a specialized surgeon, felt he was providing better care if he offered medically unnecessary surgeries that the parents wanted, rather than turning them down and risking them seeking out another provider. He said:

Quite frankly I would rather have someone who knows what they're doing and who can be a little bit empathetic to the family and to the kid and who's really going to be watching out for that kid do the surgery rather than just sending them off in the community and saying ‘I'm sorry I think you're wrong.’ To me that seems as though I'm abandoning that kid in that family.[359]

A gynecologist explained: “I think that the issue on torture—I think our feeling has been that until we have data to show that one’s better than the other, that’s a very harsh statement.”[360] She said she worried that human rights bodies did not understand the different types of surgeries under consideration, and that patient autonomy and caution should be considerations. However, she did not support a moratorium on medically unnecessary surgeries that the patient themselves did not consent to:

I think that bringing up the issue of patient autonomy in the baby is … important. And I think bringing up this experience from the advocates and from patients who’ve gone through this is very, very important. And I think that caution should be brought up. But I think to say that this can never be done is a problem because we just don’t know the consequences of not doing it.[361]

Every international human rights mechanism that has condemned surgeries on intersex infants has distinguished—at least broadly—between medically necessary operations and unnecessary ones.

For example, in its 2011 review of Germany, the Committee Against Torture (CAT) noted concern about “cases where gonads have been removed and cosmetic surgeries on reproductive organs … without effective, informed consent of the concerned individuals or their legal guardians....” The committee recommended that the government:

  1. Ensure the effective application of legal and medical standards following the best practices of granting informed consent to medical and surgical treatment of intersex people, including full information, orally and in writing, on the suggested treatment, its justification and alternatives;
  2. Undertake investigation of incidents of surgical and other medical treatment of intersex people without effective consent and adopt legal provisions in order to provide redress to the victims of such treatment, including adequate compensation;
  3. Educate and train medical and psychological professionals on the range of sexual, and related biological and physical, diversity; and
  4. Properly inform patients and their parents of the consequences of unnecessary surgical and other medical interventions for intersex people.[362]

In its 2016 review of Austria, CAT called on the government to:

  1. Take the legislative, administrative and other measures necessary to guarantee the respect for the physical integrity and autonomy of intersex persons and to ensure that no one is subjected during infancy or childhood to non-urgent medical or surgical procedures intended to decide the sex of the child;
  2. Guarantee impartial counselling services for all intersex children and their parents, so as to inform them of the consequences of unnecessary and non-urgent surgery and other medical treatment to decide on the sex of the child and the possibility of postponing any decision on such treatment or surgery until the persons concerned can decide by themselves;
  3. Guarantee that full, free and informed consent is ensured in connection with medical and surgical treatments for intersex persons and that non-urgent, irreversible medical interventions are postponed until a child is sufficiently mature to participate in decision-making and give effective consent;
  4. Undertake investigation of instances of surgical interventions or other medical procedures performed on intersex persons without effective consent and ensure that the persons concerned are adequately compensated.[363]

In its 2016 review of Hong Kong, CAT raised concern about “unnecessary and irreversible surgery” on intersex children at an early age as well as “the long-term physical and psychological suffering caused by such practices.” In addition to recommendations similar to those it made to Germany and Austria, CAT called on the government to:

Guarantee that full, free and informed consent is ensured in connection with medical and surgical treatments for intersex persons and that non-urgent, irreversible medical interventions are postponed until a child is sufficiently mature to participate in decision-making and give full, free and informed consent.[364]

In his 2013 report, the UN Special Rapporteur on Torture noted that members of sexual minorities are “disproportionately subjected to torture and other forms of ill-treatment because they fail to conform to socially constructed gender expectations.” He specifically mentioned that:

Children who are born with atypical sex characteristics are often subject to irreversible sex assignment, involuntary sterilization, involuntary genital normalizing surgery, performed without their informed consent, or that of their parents, “in an attempt to fix their sex,” leaving them with permanent, irreversible infertility and causing severe mental suffering.[365]

Children’s Rights

The US is the only UN member state that has not ratified the Convention on the Rights of the Child (CRC), the primary instrument under international law that elaborates the rights of children. However, the Convention is an authoritative and useful tool for understanding the human rights issues children face, and the measures needed to effectively address them. The American Academy of Pediatrics has twice endorsed the CRC.[366]

The Committee on the Rights of the Child, which monitors the convention, has condemned surgery on intersex children nine times, including in reviews of New Zealand,[367] South Africa,[368] Switzerland,[369] Chile,[370] France,[371] Ireland,[372] the UK,[373] and Nepal.[374]

With regard to intersex children’s rights, the CRC has called on governments to guarantee, “the rights of children to bodily integrity, autonomy and self-determination, and provide families with intersex children with adequate counselling and support.” In its country reviews, the CRC repeatedly references a 2014 joint General Comment with the Committee on the Elimination of all forms of Discrimination Against Women, which calls on states parties to: “ensure that no-one is subjected to unnecessary medical or surgical treatment during infancy or childhood, guarantee bodily integrity, autonomy and self-determination to children concerned, and provide families with intersex children with adequate counselling and support.”[375]

Women’s Rights

The United States signed the Convention on the Elimination of all Forms of Discrimination Against Women in 1980, but has not ratified the convention.

In its 2016 review of the Netherlands, the CEDAW committee, the committee that monitors states’ compliance with the Convention on the Elimination of all Forms of Discrimination Against Women, raised concern about, “Medically irreversible sex-assignment surgery and other treatments are performed on intersex children” and recommended that the government “[d]evelop and implement a rights-based health-care protocol for intersex children which ensures that children and their parents are properly informed of all options and that children are, to the greatest extent possible, involved in decision-making about medical interventions and that their choices are fully respected.”[376]

It its 2016 review of Switzerland, the CEDAW committee cited insufficient support for intersex people who have survived involuntary and medically unnecessary surgeries—referring to the surgeries as “disfiguring surgical procedures when they were babies and children.” The committee also condemned “[t]he pressure placed on parents of intersex children by medical professionals, the media and society at large, often forces them to give their consent for so called ‘medical procedures’ justified by psychosocial indications” and said that aggrieved intersex persons’ access to legal remedies is “extremely limited” by a short statute of limitations that expires by the time they become adults. The committee called Switzerland’s current practice a “failure to consult with those directly affected by these procedures in decisions that affect their lives.” The committee called on the Swiss government to ensure that no child is subjected to unnecessary medical treatment, intersex people are provided are provided effective legal regress, and medical professionals receive training on the harmful impact of unnecessary surgical interventions for intersex children.[377]

Referencing CRC[378] and CAT[379] reports on France, the CEDAW Committee noted with concern that, “Medically unnecessary and irreversible surgery and other treatment is routinely performed on intersex children.”[380]

The Right to Bodily Autonomy

The Committee on the Rights of Persons with Disabilities (CRPD) has commented three times on medically unnecessary surgeries on intersex children as a violation of the integrity of the person (article 17). In its 2015 review of Germany, CRPD criticized “the lack of implementation of the 2011 recommendations of the Committee against Torture[381] regarding upholding the bodily integrity of intersex children.”[382] In its 2016 review of Chile, CRPD urged the government to ensure free and informed consent “especially those of an invasive nature and whose effects are irreversible, such as sterilization and procedures on intersex children.”[383] In its 2016 review of Italy, CRPD, citing article 17, expressed concern that “children are subjected to irreversible surgery for intersex variation and other medical treatments without their free and informed consent” and called on the government to “guarantee bodily integrity, autonomy and self-determination to the children concerned, and provide families with intersex children with adequate counselling and support.”[384] The United States is not a party to the CRPD.

The Right to Health

In Human Rights Watch’s view, medically unnecessary surgeries on intersex children cause harm to children that interferes with the right to the highest attainable standard of health. While procedures may have evolved and improved—including to be “nerve sparing”—in recent years, there remains no evidence that these surgeries are necessary or that the ostensible medical benefits outweigh the harms.

In a 2009 report, the UN Special Rapporteur on the Right to Health said that, “Health-care providers should strive to postpone non-emergency invasive and irreversible interventions until the child is sufficiently mature to provide informed consent,” noting that, “This is particularly problematic in the case of intersex genital surgery, which is a painful and high-risk procedure with no proven medical benefits.”[385] The Special Rapporteur noted that special attention should be paid to the rights to information and consent for vulnerable groups, and referenced principles 17 and 18 of the Yogyakarta Principles to highlight the importance of safeguarding informed consent of sexual minorities.

The Yogyakarta Principles, which interpret international human rights standards as they apply to sexual orientation and gender identity, do not specifically mention sex characteristics but can be applied to intersex people. Principle 18, on protection from medical abuses, applies to surgeries discussed in this report. It calls on states to

take all necessary legislative, administrative and other measures to ensure that no child’s body is irreversibly altered by medical procedures in an attempt to impose a gender identity without the full, free and informed consent of the child in accordance with the age and maturity of the child and guided by the principle that in all actions concerning children, the best interests of the child shall be a primary consideration.[386]

Dr. Deanna Adkins, who is Fellowship Program Director of Pediatric Endocrinology at Duke University School of Medicine and the Director of the Duke Center for Child and Adolescent Gender Care, made similar recommendations in testimony she provided in a 2016 case at the US District Court for the Middle District of North Carolina. Dr. Adkin’s expert declaration was submitted to oppose HB2, a sweeping statewide law repealing non-discrimination ordinances protecting lesbian, gay, bisexual, and transgender (LGBT) people and barring transgender people from shared facilities. In her statement, referring to intersex children, Dr. Adkins argues:

It is harmful to make sex assignments based on characteristics other than gender identity. For example, in cases where surgery was done prior to the ability of the child to understand and express their gender identity, there has been significant distress in these individuals who then have to endure further surgeries to reverse the earlier treatments. It has become standard practice to wait until the gender identity is clear to make permanent surgical changes in these patients unless the changes are required to maintain the life or health of the child.[387]  

The Committee on Economic, Social and Cultural Rights (CESCR) has indicated that the International Covenant on Economic, Social and Cultural Rights (ICESCR) proscribes any discrimination in access to health-care and the underlying determinants of health, as well as to means and entitlements for their procurement, on the grounds of sexual orientation and gender identity. The US is not a party to the ICESCR but the covenant, along with the work of expert bodies to interpret it, is a useful guide to the scope and nature of the fundamental human rights it elaborates. The CESCR committee emphasized in its General Comment 14 that:

The right to health is not to be understood as a right to be healthy. The right to health contains both freedoms and entitlements. The freedoms include the right to control one’s health and body, including sexual and reproductive freedom, and the right to be free from interference, such as the right to be free from torture, non-consensual medical treatment and experimentation.[388]

In its 2017 review of Australia, the CECSR committee said it was “concerned that children born with intersex variations are subject to early surgeries and medical interventions before they are able to provide full and informed consent,” and cited CECSR article 12 (the right to health).[389] The committee called on the government to implement the 2013 Australian Senate Community Affairs References Committee report titled “Involuntary or coerced sterilization of intersex people in Australia.”[390] In its 2017 review of the Netherlands, the committee expressed concern over the “Practice of early surgeries and medical interventions on intersex children, that are not necessary for physical health and alters their sex characteristics, do not respect their right to free, prior and informed consent.”[391]

US health bodies’ positions have evolved over time. In 2004, the National Institute of Diabetes & Digestive & Kidney Diseases published its “Research Progress Report and Strategic Plan for Pediatric Urology,” which stated:

There is currently a crisis in clinical management of children with disorders of sexual differentiation, and it has received considerable public attention. It stems from two issues. First, for some of these disorders, there are insufficient data to guide the clinician and family in sex assignment. Second, the optimal application of surgery and its timing remain unclear.[392]

The 2006 Consensus Statement on the Management of Intersex Disorders acknowledged the lack of meaningful research and called for further studies, while still allowing for genitoplasty, including clitoral reduction. This statement was adopted as a position statement of the American Academy of Pediatrics.[393] The 2016 update to the Consensus Statement reads: “There is no evidence regarding the impact of surgically treated or non-treated DSDs during childhood for the individual, the parents, society or the risk of stigmatization… [t]here is still no consensual attitude regarding indications, timing, procedure and evaluation of outcome of DSD surgery.[394]

However in 2010, the AAP published a position statement opposing all forms of female genital cutting, and it made no explicit exception for girls with intersex traits.[395] Then in 2013, the AAP began advocating for psychological care prior to any surgical intervention in the case of transgender youth.[396] And in 2014, the AAP published a provisional section on “Lesbian, Gay, Bisexual, and Transgender Health and Wellness” which included a section titled “Explaining Disorders of Sex Development & Intersexuality,” stating: “If it is not medically necessary, any irreversible procedure can be postponed until the child is old enough to agree to the procedure (e.g. genital surgery).”[397]

In 2016, the American College of Obstetricians and Gynecologists issued a committee opinion cautioning that genital surgery may not be appropriate for every adolescent with “abnormalities” and that counseling is recommended prior to surgery.[398]

US Domestic Law

In 2016, the US Department of State issued a statement on Intersex Awareness Day acknowledging that: “Intersex persons routinely face forced medical surgeries that are conducted at a young age without free or informed consent. These interventions jeopardize their physical integrity and ability to live free.”[399] US laws do not specifically protect children against such abusive operations, but several areas of law prohibit conduct that could be interpreted to include medically unnecessary intersex surgeries.

Sterilization

When surgeries that reduce or eliminate reproductive capacity—such as the removal of testes from female-assigned children with Partial Androgen Insensitivity Syndrome—are performed before the patient can give informed consent to the procedure, prohibitions on involuntary sterilization are implicated. Once common in the United States, non-consensual sterilization is now recognized as a violation of the fundamental right to reproductive freedom.[400]

Several stumbling blocks may impede doctors’ conceptualization of these procedures as “sterilizations” when they are carried out on intersex children. First, reproductive capacity may not be perceived as fertility if the mode of potential reproduction seems incongruent with the child’s assigned sex. For example, one medical journal article notes that “fertility is challenging, but not impossible, for individuals with [Partial Androgen Insensitivity Syndrome] raised male. In contrast, fertility is not possible for individuals raised female.”[401] If a child with Partial Androgen Insensitivity Syndrome possesses functional testes, their fertility does not depend upon their gender assignment. However, as the passage just quoted shows, medical professionals may fail to see sperm production as a viable mode of reproduction for a child being raised as a girl—and, therefore, may not consider it a sterilizing procedure if her testes are removed.[402] This represents a narrow view of fertility and the right to preserve it, and may not be in accord with the legal understanding of the right to reproductive freedom, which is quite broad.

Second, doctors may not consider a procedure to be sterilization if its primary purpose is something other than terminating reproductive capacity. Where the procedure is medically unnecessary, however, and the benefits are not significant enough to outweigh the cost of lost fertility, the right to reproductive freedom is still implicated.

Gonadectomies on intersex children are frequently rationalized as necessary to address a risk of cancer[403] or to prevent the later development of secondary sex characteristics that are not typically associated with the assigned sex.[404] While individuals with certain intersex traits may be exposed to a heightened risk of gonadal cancer,[405] there is evidence that gonadectomy is recommended for intersex children on the basis of much weaker evidence than would prompt the same recommendation for non-intersex children and in situations where irreversible interventions could be safely delayed.[406] Additionally, changes such as the onset of menstruation or the growth of facial hair can be stalled with puberty blockers if and when it becomes clear that those changes are undesired.[407] In any case, and regardless of how medical providers view the procedures, all medically unnecessary surgeries on intersex children that compromise fertility also compromise their fundamental right to reproductive freedom.

Although parents and guardians have broad authority to make many medical decisions for children incapable of consent, courts and legislatures around the US have repeatedly found that this authority does not extend to medically unnecessary sterilization, due to its permanent impact on the exercise of fundamental rights.[408] Sterilization is an irreversible medical procedure with profound physical and psychological effects.

Court oversight can provide a meaningful layer of protection. For example, several US states have well-developed procedural tests designed to protect children’s rights while still ensuring they can receive treatment that is in their best interest in the rare cases where sterilizing procedures are recommended by doctors. One example is California, where the law prescribes a court oversight process that must be followed prior to any sterilizing procedure on an individual with a developmental disability.[409] In order to authorize the sterilization, the court must find that the patient will not become able to make the decision for themselves in the future, and that less invasive alternatives are unworkable.[410]

Such tests could be adapted for cases where parents and doctors believe genital or gonadal surgery could benefit an intersex child.[411] The court considering whether the surgery is in the child’s best interest might be required to issue findings including (1) to what extent the short- and long-term benefits, both physical and psychological, outweigh the short- and long-term risks; (2) to what extent the procedure limits the child’s future options for fertility, for development or construction of female-typical or male-typical characteristics as may be desired, and for the preservation of the individual’s natural body characteristics; and (3) whether it has been established by clear and convincing evidence that any such limitation is justified by an urgent need for the procedure, including a determination that the proposed procedure cannot be safely delayed until the individual can make the decision on their own.

While published data are limited, doctors have used state sterilization laws that require court oversight in advising parents on surgeries for their intersex children. In a case documented in a 2017 medical article, a child with 5α-R2D, a condition that causes intersex traits, doctors were considering conducting a gonadectomy at age two because “The family strongly desired gonadectomy to reinforce their decision on sex of rearing, prevent virilization at puberty, and to alleviate the distress the parents felt due to the presence of the gonads and the ambiguity they represented.” However, due to how Seattle Children’s Hospital interprets Washington state’s sterilization law, they advised parents to defer the medically unnecessary operation:

While the DSD team supported the parents’ decision for gonadectomy, hospital policy and interpretation of Washington state law prohibits parents from providing informed consent for any procedure that removes the reproductive organs of a minor (Disability Rights Washington, 2012; Seattle Children’s Hospital Bioethics Policy, 2013). Exceptions are allowed if they pose a health risk, such as the oncogenic risk posed by dysplastic gonads and/or if infertility is considered inevitable with standard treatment (Seattle Children’s Hospital Bioethics Policy, 2013). A court order authorization must be obtained for any other exception. Given the knowledge available on 5α-R2D and the patient at the time, the medical team felt this policy precluded them from offering gonadectomy to the patient without a court order.[412]

Female Genital Mutilation

The World Health Organization (WHO) defines Female Genital Mutilation (FGM) as "all procedures involving partial or total removal of the external female genitalia or injury to the female genital organs for non-medical reasons." There are four types of FGM classified by WHO:

  • Type I includes the partial or total removal of the clitoris and/or prepuce. Known as clitoridectomy, this is the most common form believed to be practiced in Iraqi Kurdistan.
  • Type II is a more invasive procedure that includes the partial or total removal of the clitoris and the labia minora. This can be performed with or without excision of the labia majora and is known as excision.
  • Type III is the most severe type of FGM, known as infibulation, which involves the narrowing of the vaginal orifice with the creation of a seal that is formed by cutting and then stitching the labia minora and/or the labia majora with or without excision of the clitoris.
  • Type IV includes all other harmful procedures to the female genitalia including pricking, piercing, incising, scraping, and cauterization.

US federal criminal law punishes with fines and up to 5 years imprisonment any person who “knowingly circumcises, excises, or infibulates the whole or any part of the labia majora or labia minora or clitoris of another person who has not attained the age of 18 years,” unless the procedure is “necessary to the health of the person on whom it is performed.”[413]

There is no reason to believe that legislators even contemplated the possibility that the anti-FGM law could be applied to surgeries on children with intersex traits, let alone intended to allow for such a possibility. On the other hand, the plain language of the federal statute seems broad enough to quite easily encompass a feminizing genitoplasty that reduces or removes clitoral tissue and is not medically necessary. Intersex activists, as well as scholars and doctors, have argued that these laws should be read as prohibiting and criminalizing the conduct of many intersex surgeries in the United States.[414]

Approximately half of the states have enacted their own female genital mutilation statutes as well. Some, such as New York’s,[415] closely resemble the federal law. A small number of state laws, however, do contain language likely intended to except surgeries performed on female-assigned intersex children. North Dakota[416] and Wisconsin[417] exempt from their FGM statutes any procedure intended to “correct an anatomical abnormality,” and Oklahoma allows otherwise prohibited procedures that are “necessary […] for purposes of cosmetic surgery.”[418]

Just as predominant gender norms in the US can influence intersex surgeries, socio-cultural factors are invoked by those who practice FGM around the world, including the desire of parents to have their daughters accepted in the community—even in cases where parents personally oppose the practice.[419] In some places, common justifications for FGM are closely related to fixed gender roles and perceptions of women and girls as gatekeepers of their family's honor, which in some cases is linked to strict expectations to prevent “deviant sexual behavior.​​​” Some of those who support FGM also justify it on grounds of hygiene and aesthetics, with notions that those who have not undergone the procedure are unclean. In societies where such beliefs are prevalent, a girl's chances of getting married are materially reduced if she has not undergone the procedure. FGM is often erroneously linked to religion, although the practice is not particular to any religious faith and predates Christianity and Islam.

Scholars and activists have drawn parallels between the practice of FGM elsewhere in the world and the cutting of intersex people’s genitals in the United States. For example, legal scholar Nancy Ehrenreich argued that “[FGM] and intersex surgeries share substantial similarities, both in the harm they cause and in their patriarchal rationales and effects” and that “intersex surgery is striking evidence that the harmful cultural practice of nonconsensual genital- (and gender-) normalizing cutting continues in [the US].”[420] Ehrenreich wrote:

Physicians’ preoccupation with the stigma that can attach to someone who is not readily identifiable as male or female is not that different, for example, from FGC[421] practitioners’ conviction that women who fail to undergo genital surgery will be seen as dirty, promiscuous, and unmarriageable. In both cases, the practitioners are responding to very real societal attitudes that can reasonably be expected to negatively affect the individuals in question.[422]

Medical practitioners in the US have identified similar parallels. Following the April 2017 arrest under the federal FGM statute of four surgeons in Michigan for performing FGM on two girls, urological surgeon I.W. Gregorio wrote in an op-ed:

The notion of performing an irreversible procedure on a child—one that will likely render her incapable of achieving sexual pleasure in the future —is utterly abhorrent to me, as an insult on the body autonomy of a minor who is, by definition, incapable of giving informed consent. Yet this is what some surgeons in the U.S. do every year. And so far, law enforcement has turned a blind eye. Since the 1950s, some surgeons have tried to “fix” intersex, projecting their assumptions about sex onto the bodies of children to justify surgical interventions that were often harmful and medically unnecessary. Eight years ago, I did irrevocable damage to the first intersex person I ever met, taking out the gonads of a 17-year-old girl who found out after she never got her period that she had XY chromosomes, with internal testicles instead of ovaries and a uterus…. While some would argue that surgical practice has improved in the past decades, the fact remains that few attempts have been made to assess the long-term outcomes of these interventions. The psychological damage caused by intervention is just as staggering, as evidenced by generations of intersex adults dealing with post-traumatic stress disorder, problems with intimacy and severe depression. Some were even surgically assigned a gender at birth, only to grow up identifying with the opposite gender.[423]

Informed Consent

In every state, failure to obtain informed consent for a surgical procedure may give rise to a medical malpractice action, even if the procedure is performed in a way that meets standards of care.[424] The specific elements to be disclosed to a patient may vary depending on state law jurisdiction, but a medical practitioner is generally required to describe:

  • the procedure to be performed,
  • the goals or anticipated benefits of this course of treatment,
  • any material risks it carries,
  • and available alternatives to the proposed procedure.[425]

Generally speaking, doctors who fail to disclose information adequate for the patient or their guardian to make an informed decision may often be held liable for any negative outcomes. This report documents several examples in which doctors may have failed to provide full information to parents, failing in particular to ensure that they understood the full scope of the relevant risks—which, depending on the procedure, can include:

  • scarring,
  • incontinence,
  • loss of sexual sensation and function,
  • psychological trauma including depression and post-traumatic stress disorder,
  • the risk of anesthetic neurotoxicity attendant to surgical procedures on young children,
  • sterilization,
  • the need for lifelong hormonal therapy, and
  • irreversible surgical imposition of a sex assignment that the individual later rejects.

Existing informed consent standards also dictate that physicians should ensure that parents adequately understand the aims of the procedure—and in particular the extent to which these are cosmetic or tied to concerns about social integration, as opposed to health-related. Finally, doctors should ensure that parents are fully aware of the extent to which surgeries could be safely delayed until a child can participate in the decision-making process.

Additionally, the American Academy of Pediatrics emphasizes the importance of fostering young patients’ autonomy by ensuring that children can provide “assent,” whenever possible, to complement the “informed permission” given by their parent(s) or guardian(s).[426] While this is not a legal standard, it is an important ethical standard.

The AAP explains: “[d]issent by the pediatric patient should carry considerable weight when the proposed intervention is not essential and/or can be deferred without substantial risk.”[427] If the patient is still too young to voice dissent, such as when genital surgeries are proposed in the first few years of life, special care should be taken to preserve the child’s options when the procedure under consideration is not medically necessary.

Recommendations

To the United States Congress

  • Pass legislation to ban all surgical procedures that seek to alter the gonads or genitals of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred. The legislation should provide for the provision of appropriate support services for people who have been subjected to these operations, including access to health care and to social and psychological support​.

Until use of surgical procedures in such circumstances is outlawed, the following entities and individuals should take steps to impose an effective moratorium on their use:

To State Insurance Boards and Departments of Financial Services

  • Issue regulations that bar insurers from providing reimbursement for all surgical procedures that seek to alter the gonads or genitals of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.

To Private Insurance Companies

  • Publicly affirm and tell providers that the company will no longer reimburse for surgical procedures that seek to alter the gonads or genitals of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.
  • Publicly affirm that the company will reimburse for psycho-social care and support services for parents related to caring for children with atypical sex characteristics, as well as psycho-social support services for those children.

To State Legislatures

  • Introduce legislation providing for court oversight whenever surgical procedures are considered for children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.

To the US Department of Health and Human Services

  • Withhold Medicaid funding for medically unnecessary surgical procedures on intersex children.
  • Ensure that accurate information on the potential harms of and lack of data on any claimed benefits of medically unnecessary surgeries on children with atypical sex characteristics are integrated into parenting and public health campaigns.

To the National Institutes of Health

  • Ensure that all NIH-funded research on intersex (DSD) populations involves input from intersex advocacy groups and is held to ethical and legal standards for use of human research subjects;
  • Publicly support a moratorium on medically unnecessary surgeries on children with atypical sex characteristics without the consent of the patients themselves.
  • Support research on the psychological and health outcomes of child and adult intersex people who have not undergone cosmetic surgeries.
  • Support research into the cancer risk of various intersex conditions, so that decisions about gonadectomy can be evidence-based.
  • Cease funding research on intersex children that involves genital exams or photography that does not directly benefit the patient.

To the American Medical Association

  • As a matter of urgency, pass the proposed resolution as recommended in the AMA Board of Trustees report 7-I-16, that “optimal management of DSD through individualized, multidisciplinary care…: (1) seeks to foster the well-being of the child and 20 the adult he or she will become; (2) respects the rights of the patient to participate in decisions 21 and, except when life-threatening circumstances require emergency intervention, defers 22 medical or surgical intervention until the child is able to participate in decision making; and 23 (3) provides psychosocial support to promote patient and family well-being.”[428]

To the American Psychological Association

  • Issue a resolution on the treatment of intersex children recommending:
    • A moratorium on surgeries performed on children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred;
    • inclusion of psychologists/mental health care in treatment teams; and
    • discussion of risks, benefits, and alternatives to any proposed treatment with psychologists/mental health providers prior to any irreversible decisions.

To the Attorneys General of all 50 states

  • Launch an inquiry into the practice of conducting medically unnecessary surgeries on children with atypical sex characteristics without the patient’s consent at state hospitals, including by collecting data from hospitals on the number of such operations performed and the names of the doctors performing them.
  • Consider whether any applicable statutes prohibiting FGM should be enforced in such cases.

To the American Academy of Pediatrics

  • Retract the support of the AAP for the 2006 Consensus Statement as an official position statement of the AAP, and replace it with a statement that is consistent with international human rights standards and with the AAP statements on Assent, Informed Permission and Consent, and on FGM. The new statement should also:
    • advocate to end to surgical procedures on children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.;
    • advise that parents be given complete information about their intersex child’s condition and the risks, benefits, and alternatives of any recommended procedures;
    • advise that children and youth with atypical sex characteristics be given complete information about their conditions in an age-appropriate way;
    • recommend that doctors routinely give parents of children with atypical sex characteristics information about available peer support groups; and
    • recommend that parents routinely have access to mental health support and information from mental health experts about their child’s condition before making irreversible decisions about their child’s health.[429]

To the World Health Organization:

  • In line with WHO’s stated opposition to early genital or sterilizing surgeries on intersex youth in the 2013 report “Eliminating Forced, Coercive and Otherwise Involuntary Sterilization,” issue guidance on how medical professional bodies and governments should combat such practices.

To UNICEF:

  • In line with the 2015 joint statement UNICEF issued that condemned “unnecessary surgery and treatment on intersex children without their consent” as an “abuse in medical settings,” issue guidance on how medical professional bodies and governments should combat such practices.
  • Incorporate into UNICEF’s guidance on pediatric health a prohibition on all surgical procedures that seek to alter the gonads or genitals of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.

To the Society for Pediatric Urology, the Pediatric Endocrine Society, and the North American Society for Pediatric and Adolescent Gynecology:

  • Issue guidance in line with the proposed AMA resolution as recommended in the AMA Board of Trustees report 7-I-16 “that medically unnecessary surgeries in individuals born with differences of sex development are unethical and should be avoided until the patient can actively participate in decision-making.”

To the World Professional Association for Transgender Health:

  • Remove the intersex exception from WPATH’s Standards of Care and assert that similar standards for the sequence of interventions be applied to intersex children facing partially reversible or irreversible procedures that are not necessary for physical health.

Acknowledgments

This report is the result of a collaboration between interACT and Human Rights Watch. The primary field research was conducted by Dr. Suegee Tamar-Mattis, an intersex person and family physician in California working as a consultant to Human Rights Watch, and Kyle Knight, a Human Rights Watch researcher based in New York. Kimberly Zieselman, executive director of interACT, and Anne Tamar-Mattis, legal director of interACT, provided outreach support and analytical guidance throughout the research process.

Rashima Kwatra, intern in the lesbian, gay, bisexual, and transgender (LGBT) rights program at Human Rights Watch conducted foundational background research that led to this project. Cristian Gonzales, intern in the LGBT rights program, provided legal research in the early stages of the project. Kyle Ranieri, LGBT program intern, helped with data searches and analysis. Aditi Shetty, program coordinator at Human Rights Watch, provided research assistance. Sylvan Fraser, staff attorney at interACT, drafted several of the legal sections of the report.

The report was edited by Anne Tamar-Mattis, Alesdair Ittelson, deputy legal director at interACT, Sylvan Fraser, and Kimberly Zieselman. Graeme Reid, director of Human Rights Watch’s LGBT rights program edited the report as well. The report was reviewed by Michael Garcia Bochenek, senior children’s rights counsel, Maria McFarland Sanchez-Moreno, co-director of the US program, Amanda Klasing, senior women’s rights researcher, Megan McLemore, senior health and human rights researcher, and Kriti Sharma, disability rights researcher. Mauro Cabral Grinspan, a member of the Human Rights Watch LGBT program advisory committee and executive director of GATE, reviewed the report and offered feedback. Dr. Susan Stred, MD, professor of pediatrics at SUNY-Upstate Medical School reviewed and commented on the report.

Chris Albin-Lackey, senior legal adviser, and Joseph Saunders, deputy program director, reviewed the report.

Production assistance was provided by Olivia Hunter, publications coordinator; Fitzroy Hepkins, administrative manager; and Jose Martinez, senior coordinator.

Human Rights Watch and interACT would like to thank:

All interviewees, named and unnamed, The AIS-DSD Support Group, Arlene Baratz, MD, Georgiann Davis, PhD, the interACT staff and board of directors, and Bo Laurent.

[1] Official interACT Policy on Participation in Research, http://interactadvocates.org/interact-policy-on-participation-in-research/

[3] Statistics on intersex births vary, but 1 in 2,000 is one of the most commonly cited numbers globally. Melanie Blackless et al., “How Sexually Dimorphic Are We? Review and Synthesis,” American Journal of Human Biology 12 (2) (2000): 151-166, doi:10.1002/(SICI)1520-6300(200003/04)12:2<151::AID-AJHB1>3.0.CO;2-F; for a detailed analysis of the breakdown of various statistics, see this blog post by OII-Australia: https://oii.org.au/16601/intersex-numbers/

[4] Human Rights Watch interview with Susan M., California, October 25, 2016>

[5] Elizabeth Reis. Bodies in Doubt: An American History of Intersex. (Baltimore, Maryland: The Johns Hopkins University Press, 2009).

[6] Alice Domurat Dreger. Hermaphrodites and the Medical Invention of Sex. (United States of America: Harvard University Press, 1998).

[7] Reis, Bodies in Doubt: An American History of Intersex.

[8] Milton Diamond and Keith Sigmundson, “Sex Reassignment at Birth: Long-term Review and Clinical Implications,” Archives of Pediatric and Adolescent Medicine, vol.151(3) (1997), pp.298-304.

[9] John Colapinto. "The True Story of John/Joan". Rolling Stone. December 11, 1997, pp. 54–97. https://web.archive.org/web/20000815095602/http://www.pfc.org.uk/news/1998/johnjoan.htm

[10] John Colapinto, As Nature Made Him: The Boy Who Was Raised as a Girl. (New York: Harper Collins, 2000).

[11] Peter A. Lee et al., “Global Disorders of Sex Development Update Since 2006: Perceptions, Approach and Care,” Hormone Research in Pediatrics 85(3) (2016):158-180,  https://www.ncbi.nlm.nih.gov/pubmed/26820577; P. Mouriquand et al., “The ESPU/SPU standpoint on the surgical management of Disorders of Sex Development (DSD),” Journal of Pediatric Urology 10(1)(2014):9-10, http://www.jpurol.com/article/S1477-5131(13)00313-6/fulltext; The National Institutes of Health, the National Institute of Diabetes & Digestive & Kidney Diseases, “Research progress Report and Strategic Plan for Pediatric Urology,” 2006, https://www.niddk.nih.gov/about-niddk/strategic-plans-reports/Pages/niddk-research-progress-report-strategic-plan-pediatric-urology.aspx; In 2004, a 15-member multidisciplinary group convened by the Hastings Center concluded: “None of the appearance-altering surgeries need be done urgently. Surgery to normalize appearance without the consent of the patient lacks ethical justification in most cases.”Joel Frader et. al., “Health Care Professionals and Intersex Conditions,” The Hastings Institute, http://www.isna.org/pdf/Frader2004.pdf

[12] Vernon Rosario. 'An Interview with Cheryl Chase.” Journal of Gay & Lesbian Psychotherapy, 10(2) (2006): 93 - 104, http://vrosario.bol.ucla.edu/CV/Chase.pdf

[13] Human Rights Watch interview with Neha K., California, October 24, 2016.

[14] Human Rights Watch interview with John M., Illinois, February 5, 2017.

[15] The Intersex Society of North America, http://www.isna.org/

[17] “American Academy of Pediatrics Position on Intersexuality,” Intersex Day, October 15, 2010, http://intersexday.org/en/aap-position-1996/

[18] Diamond and Sigmundson, “Sex Reassignment at Birth: Long-term Review and Clinical Implications,” Archives of Pediatric and Adolescent Medicine, pp. 298-304.

[19]  Colapinto. "The True Story of John/Joan". Rolling Stone. pp. 54–97.

[20] “GLMA Passes Resolution on Intersex Surgery,” International Foundation for Gender Education, March 7, 1998. http://www.ifge.org/news/1998/march/nws3218b.htm

[21] The American Academy of Pediatrics, “Evaluation of the Newborn with Developmental Anomalies of the External Genitalia.” Pediatrics 106(1) (2000), http://pediatrics.aappublications.org/content/106/1/138.

[22] The National Institutes of Health, the National Institute of Diabetes & Digestive & Kidney Diseases, Research Progress Report and Strategic Plan for Pediatric Urology (2006).

[23] Peter Lee, et. al., “Consensus Statement on Management of Intersex Disorders,” Pediatrics 118 (2) (2006): p. 554-563, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2082839/

[24] Alice Dreger et at., “Prenatal Dexamethasone for Congenital Adrenal Hyperplasia: An Ethics Canary in the Modern Medical Mine.” Journal of Bioethical Inquiry 9(3) (2012): p.277-294, https://link.springer.com/article/10.1007%2Fs11673-012-9384-9

[25] “Policy Statement—Ritual Genital Cutting of Female Minors,” American Academy of Pediatrics 126(1) (2010), http://pediatrics.aappublications.org/content/pediatrics/126/1/191.full.pdf.  

[26] “First ever international intersex forum,” ILGA, May 22, 2013, http://ilga.org/first-ever-international-intersex-forum/

[27] About the Disorders of Sex Development Translational Research Network, https://dsdtrn.genetics.ucla.edu/aboutdsdtrn

[28] The World Professional Association for Transgender Health (WPATH), “Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People Version 7,” http://www.wpath.org/site_page.cfm?pk_association_webpage_menu=1351&pk_association_webpage=3926

[29]United Nations Committee against Torture, “Consideration of Reports Submitted by States Parties under Article 19 of the Convention,” CAT/C/DEU/CO/5, December 12, 2011.

[30] Hida Viloria Chairperson, “Open Letter: A Call for the Inclusion of Human Rights for Intersex People,” Organisation Intersex International, December 10, 2012, https://www.ilga-europe.org/sites/default/files/Attachments/hrd_2012_-_intersex_forum_-_un_navil_pillay_letter.pdf

[31] Sarah Creighton, et. al., “Timing and nature of reconstructive surgery for disorders of sex development,” Journal of Pediatric Urology, 8(6) (2012): 602-610, http://www.ncbi.nlm.nih.gov/pubmed/23146296

[32] Organisation Intersex International Europe, “Malta Declaration,” December 1, 2013, https://oiieurope.org/malta-declaration/.

[33] David Levine, et al., “Office-Based Care for Lesbian, Gay, Bisexual, Transgender, and Questioning Youth.” Pediatrics 132(1) (2013), http://pediatrics.aappublications.org/content/132/1/e297

[34] United Nations Human Rights Council, “Report of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Juan E. Méndez,” A/HRC/22/53, February 1, 2013.

[35] United Nations World Health Organization, et. al., “Eliminating Forced, Coercive and Otherwise Involuntary Sterilization—An Interagency Statement,” World Health Organization, May 2014.

[36] “Explaining Disorders of Sex Development & Intersexuality,” Lesbian, Gay, Bisexual, and Transgender Health and Wellness of the American Academy of Pediatrics, https://www.healthychildren.org/English/health-issues/conditions/genitourinary-tract/Pages/Explaining-Disorders-of-Sex-Development-Intersexuality.aspx

[37]The European Union Agency for Fundamental Rights, “The Fundamental Rights Situation of Intersex People,” April 2015, http://fra.europa.eu/en/publication/2015/fundamental-rights-situation-intersex-people

[38] Government of Malta, “Gender Identity, Gender Expression and Sex Characteristics Act,” April 2015, http://justiceservices.gov.mt/DownloadDocument.aspx?app=lp&itemid=26805&l=1 (accessed April 22, 2017).

[39] Office of the High Commissioner for Human Rights, joint statement, “United Nations entities call on States to act urgently to end violence and discrimination against lesbian, gay, bisexual, transgender and intersex (LGBTI)1 adults, adolescents and children,” September 2015, http://www.ohchr.org/Documents/Issues/Discrimination/Joint_LGBTI_Statement_ENG.PDF  (accessed April 22, 2017).

[40] See Appendix VII for the joint resignation letter. Alice Dreger, “Rejecting the Tranquilizing Drug of Gradualism in Intersex Care.” Alicedreger.com, November 21, 2015, http://alicedreger.com/DSD_human_rights.

[41] United Nations Human Rights Office of the High Commissioner, “Opening Statement by UN High Commissioner for Human Rights Zeid Ra'ad Al Hussein at the 30th session of the Human Rights Council,” http://www.ohchr.org/en/NewsEvents/Pages/DisplayNews.aspx?NewsID=16414&LangID=E#sthash.BWwySNIH.dpuf.

[42] The American College of Obstetricians and Gynecologists, Committee on Adolescent Health Care, “Committee Opinion, Number 686,” January 2017, https://www.acog.org/Resources-And-Publications/Committee-Opinions/Committee-on-Adolescent-Health-Care/Breast-and-Labial-Surgery-in-Adolescents.  

[43] Lee et al., “Global Disorders of Sex Development Update Since 2006: Perceptions, Approach and Care.”

[44] American Medical Association, “American Medical Association House of Delegates (I-16), Report of Reference Committee on Amendments to Constitution and Bylaws,” 2016, https://assets.ama-assn.org/sub/meeting/documents/i16-ref-comm-conby.pdf

[45] Department of Health and Human Services, “Nondiscrimination in Health Programs and Activities; Final Rule. 45 CFR Part 92,” Final Register 81(96), May 18, 2016, https://www.gpo.gov/fdsys/pkg/FR-2016-05-18/pdf/2016-11458.pdf.

[46] “Darlington Statement: Joint consensus statement from the intersex community retreat in Darlington,” March 2017, https://oii.org.au/wp-content/uploads/key/Darlington-Statement.pdf.

[47] OII Europe, “The 1st European Intersex Community Event—Vienna Statement,” March 31, 2017, https://oiieurope.org/statement-1st-european-intersex-community-event-vienna-30st-31st-march-2017/

[48] OII Europe, “4th International Intersex Forum—Media Statement,” April 26, 2017, https://oiieurope.org/4th-international-intersex-forum-media-statement/

[49] Palm Center, “Re-Thinking Genital Surgeries on Intersex Infants,” June 2017, http://www.palmcenter.org/wp-content/uploads/2017/06/Re-Thinking-Genital-Surgeries-1.pdf

[50] Department of Health and Human Services, “Nondiscrimination in Health Programs and Activities.”

[51] Human Rights Watch interview with Ruth N., Maryland, January 26, 2017.

[52] Human Rights Watch interview with Rebecca C., California, October 27, 2016.

[53] Human Rights Watch interview with Susan M., California, October 25, 2016.

[54] Human Rights Watch interview with Sam I., Texas, January 7, 2017. ​

[55] Human Rights Watch interview with Adrian P., Illinois, February 7, 2017.

[56] Human Rights Watch interview with Adrian P., Illinois, February 7, 2017.

[57] Human Rights Watch interview with Dierdre P., location withheld, February 8, 2017.

[58] Human Rights Watch interview with Ruth N., Maryland, January 26, 2017.

[59] Human Rights Watch interview with Clarissa B., March 2, 2017.

[60] Human Rights Watch interview with Jamie J., New York, December 3, 2016.

[61] Human Rights Watch interview with Stuart L., location withheld, February 5, 2017.

[62] Human Rights Watch interview with Jackie N., California, October 25, 2016.

[63] Human Rights Watch interview with Ava A., Texas, January 9, 2017.

[64] Human Rights Watch interview with Kendra L., location withheld, February 24, 2017.

[65] Human Rights Watch interview with Ethan F., Wisconsin, February 8, 2017.

[66] Human Rights Watch interview with an endocrinologist, February 23, 2017.

[67] Human Rights Watch interview with a urologist, February 6, 2017.

[68] Lee et al., “Global Disorders of Sex Development Update Since 2006: Perceptions, Approach and Care.”

[69] Human Rights Watch interview with a psychologist, November 21, 2016.

[70] Human Rights Watch interview with a gynecologist, February 3, 2017.

[71] Human Rights Watch interview with a psychologist, November 21, 2016.

[72] Human Rights Watch interview with a psychologist, January 30, 2017.

[73] Human Rights Watch interview with an endocrinologist, February 1, 2017.

[74] Human Rights Watch interview with an endocrinologist, February 1, 2017.

[75] Human Rights Watch interview with Adrian P., Illinois, February 7, 2017.

[76] Human Rights Watch interview with Carmen S., New York, December 2, 2016.

[77] Natalie Angier, “New Debate Over Surgery on Genitals.” New York Times, May 13, 1997, http://select.nytimes.com/gst/abstract.html?res=F00A1EF63B5D0C708DDDAC0894DF494D81; Geoffrey Cowley, “Gender Limbo,” Newsweek, May 19, 1997.

[78] Human Rights Watch interview with a gynecologist, March 7, 2017.

[79] Human Rights Watch interview with an endocrinologist, February 27, 2017.

[80] Human Rights Watch interview with an endocrinologist, February 1, 2017.

[81] Frader et. al., “Health Care Professionals and Intersex Conditions.”

[82] The Consortium on Disorders of Sex Development, “Clinical Guidelines for the Management of Disorders of Sex Development in Childhood and Handbook for Parents,” 2006. www.dsdguidelines.org

[83] Human Rights Watch interview with a gynecologist, February 3, 2017.

[84] Human Rights Watch interview with a psychiatrist, January 25, 2017.

[85] Human Rights Watch interview with a urologist, February 15, 2017.

[86] Human Rights Watch interview with a urologist, February 15, 2017.

[87] Human Rights Watch interview with a psychologist, January 30, 2017.

[88] Human Rights Watch interview with a psychologist, January 2, 2017.

[89] Lee et al., “Consensus Statement on Management of Intersex Disorders.”

[90] Human Rights Watch interview with a mental health social worker, December 4, 2016.

[91] Human Rights Watch interview with an endocrinologist, February 23, 2017.

[92] Human Rights Watch interview with an endocrinologist, February 23, 2017.

[93] Human Rights Watch interview with a psychologist, January 30, 2017.

[94] Dreger, “Rejecting the Tranquilizing Drug of Gradualism in Intersex Care.”

[95] Ibid.

[96]Ibid.

[97] Tiger DeVore, “Tiger DeVore’s Statement,” Alicedreger.com, November 21, 2015, http://alicedreger.com/Tiger_Devore

[98] Human Rights Watch interview with a practitioner, February 3, 2017.

[99] Wiebren A.A. Tjalma, “Assembling a Functional Clitoris and Vulva from a Pseudo-Penis: A Surgical Technique for an Adult Woman with Congenital Adrenal Hyperplasia.” Journal of Pediatric and Adolescent Gynecology. Vol. 30(3) (2017), pp. 425–428.

[100] Hisham A and Mat Zain MA, “Letter to the Editor Regarding Article, ‘Assembling a Functional Clitoris and Vulva from a Pseudo-Penis: A Surgical Technique for an Adult Woman with Congenital Adrenal Hyperplasia’,” Journal of Pediatric and Adolescent Gynecology  30(4) (2017):513, doi: 10.1016/ j.jpag.2017.02.008.

[101] Wiebren Tjalma, “The Blessings of Erectile Bodies.” Journal of Pediatric and Adolescent Gynecology 30(4) (2017):514-515, http://www.jpagonline.org/article/S1083-3188(17)30262-0/abstract.

[102] Human Rights Watch interview with Bo Laurent, California, October 25, 2016.

[103] Human Rights Watch interview with an endocrinologist, February 23, 2017.

[104] This data is compiled from the HCUP National (Nationwide) Inpatient Sample (NIS), the HCUP Kids' Inpatient Database (KID), or the HCUP State Inpatient Databases (SID). United States Department of Health and Human Services, Agency for Healthcare Research and Quality Healthcare Cost and Utilization Project, HCUP-net database, https://hcupnet-archive.ahrq.gov/ (accessed July 4, 2017).

[105] Lily C. Wang and Dix P. Poppas, “Surgical Outcomes and Complications of Reconstructive Surgery in the Female Congenital Adrenal Hyperplasia Patient: What Every Endocrinologist Should Know," Journal of Steroid Biochemistry and Molecular Biology 165(Pt A) (2016):137-144, https://www.ncbi.nlm.nih.gov/pubmed/26995108. Recently, doctors at a major conference presented information from one registry (which is currently inaccessible to patient groups) confirming the frequency of certain surgeries performed on infants. Regarding initial surgical intervention for children with CAH, they noted: “544 patients underwent feminizing genitoplasty between 2004-2014, median age at initial surgery: 9.9 months.”

[106] Natalie Nokoff et al., “Prospective Assessment of Cosmesis Before and After Genital Surgery,” Journal of Pediatric Urology 13(1) (2017): 28.e1 - 28.e6, http://www.jpurol.com/article/S1477-5131(16)30279-0/abstract.

[107] Rebecca Ellens et al., “Psychological Adjustment in Parents of Children Born with Atypical Genitalia One Year

After Their Child Undergoes Genitoplasty,” The Journal of Urology, May 11, 2017, 10.1016/j.juro.2017.05.035.

[108] Lee et al., “Global Disorders of Sex Development Update Since 2006: Perceptions, Approach and Care.”

[109] Human Rights Watch interview with an endocrinologist, February 1, 2017.

[110] Human Rights Watch interview with a urologist, February 15, 2017.

[111] Human Rights Watch interview with an endocrinologist, February 27, 2017.

[112] Human Rights Watch interview with a gynecologist, February 3, 2017.

[113] Human Rights Watch interview with a urologist, February 6, 2017.

[114] Human Rights Watch interview with an endocrinologist, February 1, 2017.

[115] Human Rights Watch interview with a psychologist, January 30, 2017.

[116] Human Rights Watch interview with a psychiatrist, January 25, 2017.

[117] Human Rights Watch interview with a gynecologist, March 7, 2017.

[118] Human Rights Watch interview with an endocrinologist, February 23, 2017.

[119] The Committee on Bioethics of the Council of Europe, “The Rights of Children in Biomedicine: Challenges Posed by Scientific Advances and Uncertainties,” Council of Europe, January 16, 2017, http://www.coe.int/en/web/children/-/study-on-the-rights-of-children-in-biomedicine.

[120] Ibid.

[121] Human Rights Watch interview with Patty P., California, October 27, 2016.

[122] Katrina Karkazis, Fixing Sex: Intersex, Medical Authority, and Lived Experience, (Durham: Duke University Press, 2008).

[123] Human Rights Watch interview with Ava A., Texas, January 9, 2017.

[124] Human Rights Watch interview with Margy K., California, October 29, 2016.

[125] The Consortium on Disorders of Sex Development, “Clinical Guidelines for the Management of Disorders of Sex Development in Childhood and Handbook for Parents,” 2006. www.dsdguidelines.org

[126] Sarah Creighton et al., “Timing and Nature of Reconstructive Surgery for Disorders of Sex Development – Introduction,” Journal of Pediatric Urology (2012) (noting that “the vagina has no function in early childhood”); Lisa Melton, “New Perspectives on the Management of Intersex,” The Lancet (2001).

[127] Human Rights Watch interview with Sam I., Texas, January 7, 2017.

[128] Human Rights Watch interview with an endocrinologist, February 1, 2017.

[129] Human Rights Watch interview with a mental health social worker, December 4, 2016.

[130] Human Rights Watch interview with Molly M., location withheld, January 10, 2017.

[131] As explained by interACT in a submission to the UN Committee Against Torture: “Egregiously, doctors who perform genital-normalizing surgery are well aware that many of their patients will reject their assigned sex. One review recognized that 10% of congenital adrenal hyperplasia (CAH) cases develop gender dysphoria, but still concluded that “assigning female gender and performing premature surgery is safe in the majority of cases.” (Furtado, P. S. et al. “Gender dysphoria associated with disorders of sex development,” Nat. Rev. Urol. advance online publication 9 October 2012; doi:10.1038/nrurol.2012.182.) In other words, the authors support reducing or removing the phalloclitoris and performing irreversible feminizing genitoplasty on infants with CAH, in spite of the fact that one in 10 of those infants will grow to identify as male. These authors further recognize rates of gender dysphoria as high as 8.5-20% in intersex conditions generally, yet maintain that early surgery remains safe. (Furtado et al, 2012) An international consensus statement on treatment of intersex conditions reaches similar conclusions, even while recognizing rates of gender change as high as 4o percent in some conditions. (Hughes IA et al. Consensus statement on management of intersex disorders, Archives of Disease in Childhood 2006, 91:554-63.).” The interACT submission is available at: http://tbinternet.ohchr.org/Treaties/CAT/Shared%20Documents/USA/INT_CAT_CSS_USA_18525_E.pdf

[132] Lee et al., “Consensus Statement on Management of Intersex Disorders.”; Lee et al., “Global Disorders of Sex Development Update Since 2006: Perceptions, Approach and Care.”

[133] Human Rights Watch interview with Mark R. Texas, January 7, 2017.

[134] Human Rights Watch interview with Dierdre P., location withheld, February 8, 2017.

[135] Human Rights Watch interview with Adrian P., Illinois, February 7, 2017.

[136] Human Rights Watch interview with Adrian P., Illinois, February 7, 2017.

[137] Human Rights Watch interview with Neha K., California, October 24, 2016.

[138] Human Rights Watch interview with Patrick L., New York, October 29, 2017.

[139] Human Rights Watch interview with Sam I., Texas, January 7, 2017.​

[140] Human Rights Watch interview with Neha K., California, October 24, 2016.

[141] Human Rights Watch interview with Ruth N., Maryland, January 26, 2017.

[142] Human Rights Watch interview with Carmen S., New York, December 2, 2016.

[143] Human Rights Watch interview with Carmen S., New York, December 2, 2016.

[144] Human Rights Watch interview with Stella K., Massachusetts, December 6, 2016.

[145] One adult said: “My parents were told to dilate me, and they tried but it was too weird for them...I remember them dilating me, and then they said they couldn’t do it any more so they stopped.” 

[146] Human Rights Watch interview with Lina T., Maryland, January 26, 2017.

[147] Charmian Quigley, “Genital examination: when and how? (What I Learned from Jodie).” http://www.dsdfamilies.org/mednote/genital_examination.php

[148] Anne Tamar-Mattis et al., “Emotionally and Cognitively Informed Consent for Clinical Care for Differences of Sex Development,” Psychology & Sexuality (2013), http://katrinakarkazis.com/kkwp/wp-content/uploads/2013/01/informed-cons... and Karkazis, Fixing Sex (2008).

[149] Creighton S1, Alderson J, Brown S, Minto CL., “Medical Photography: Ethics, Consent and the Intersex Patient,” British Journal of Urology International 89(1) (2002):67-71, https://www.ncbi.nlm.nih.gov/pubmed/11849163.

[150] John Money, “Genital Examinations and Exposure Experienced as Nonsocomial Sexual Abuse in Childhood.” The Journal of Nervous and Mental Disease Vol. 175(12): pp.713-721.

[151] Heino Meyer-Bahlburg et al., “Stigma in Medical Settings as Reported Retrospectively by Women with Congenital Adrenal Hyperplasia (CAH) for Their Childhood and Adolescence,” Journal of Pediatric Psychology 42(5) (2015): 1–8, https://academic.oup.com/jpepsy/article/42/5/496/2622419/Stigma-in-Medical-Settings-As-Reported.

[152] Human Rights Watch interview with Dierdre P., location withheld, February 8, 2017. Other interviewees experienced their childhood exams as sexual abuse as well. For example, Carmen S. said: “The way that I reacted to them and feel about them are incredibly similar to the experiences reported by kids who have been sexually abused.” Human Rights Watch interview with Carmen S., New York, December 2, 2016.

[153] Human Rights Watch interview with Dierdre P., location withheld, February 8, 2017.

[154] Human Rights Watch interview with Neha K., California, October 24, 2016.

[155] Human Rights Watch interview with Sam I., Texas, January 7, 2017. ​

[156] Human Rights Watch interview with Ruth N., Maryland, January 26, 2017.

[157] Human Rights Watch interview with Adrian P., Illinois, February 7, 2017.

[158] Human Rights Watch interview with Theresa N., California, October 26, 2016.

[159] Lee et al., “Consensus Statement on Management of Intersex Disorders.”

[160] Meyer-Bahlburg et al., “Stigma in Medical Settings as Reported Retrospectively by Women with Congenital Adrenal Hyperplasia (CAH) for Their Childhood and Adolescence.”

[161] Human Rights Watch interview with a urologist, February 23, 2017.

[162] Human Rights Watch interview with Ellen B., location withheld, January 8, 2017.

[163] Human Rights Watch interview with Thomas A., location withheld, December 6, 2016.

[164] Human Rights Watch interview with Christine T., location withheld, December 5, 2016.

[165] Karkazis, Fixing Sex (2008).

[166] Human Rights Watch interview with Molly M., location withheld, January 10, 2017.

[167] Human Rights Watch interview with Patty P., California, October 27, 2016.

[168] Human Rights Watch interview with Sam I., Texas, January 7, 2017. ​

[169] Human Rights Watch interview with Neha K., California, October 24, 2016.

[170] Human Rights Watch interview with Sam I., Texas, January 7, 2017. ​

[171] Human Rights Watch interview with John M., Illinois, February 5, 2017.

[172] Human Rights Watch interview with Carmen S., New York, December 2, 2016.

[173] Human Rights Watch interview with a urologist, February 6, 2017.

[174] Human Rights Watch interview with Carl B., location withheld, January 26, 2017.

[175] Human Rights Watch interview with Judy B., location withheld, January 26, 2017.

[176] Human Rights Watch interview with Wendy N., location withheld, January 28, 2017.

[177] Human Rights Watch interview with Wendy N., location withheld, January 28, 2017. In a 2016 paper published in the Journal of Pediatric Urology, doctors examined a cohort of 37 pediatric patients with atypical genitalia from children’s hospitals across the country. Of the 37 cases, 35 opted for cosmetic surgery on their children and two did not. None of the patients had a UTI prior to surgery; one reported a UTI within 6 months of a feminizing genitoplasty operation. Natalie Nokoff et al., “Prospective Assessment of Cosmesis Before and After Genital Surgery.”

[178] Human Rights Watch interview with Christine T., location withheld, December 5, 2016.

[179] Human Rights Watch interview with Carmen S., New York, December 2, 2016.

[180] Human Rights Watch interview with John M., Illinois, February 5, 2017.

[181] Human Rights Watch interview with Rebecca C., California, October 27, 2016.

[182] Human Rights Watch interview with Adrian P., Illinois, February 7, 2017.

[183] Human Rights Watch interview with Theresa N., California, October 26, 2016.

[184] Human Rights Watch interview with Neha K., California, October 24, 2016.

[185] Human Rights Watch interview with Tracey A., location withheld, December 6, 2016.

[186] Human Rights Watch interview with Molly M., location withheld, January 10, 2017.

[187] Human Rights Watch interview with Kate R., location withheld, December 4, 2017.

[188] Human Rights Watch interview with Ellen B., location withheld, January 8, 2017.

[189] Human Rights Watch interview with Wendy N., location withheld, January 28, 2017.

[190] Human Rights Watch interview with Patricia P., location withheld, December 4, 2016.

[191] Human Rights Watch interview with Tracey A., location withheld, December 6, 2016.

[192] Human Rights Watch interview with Jackie N., California, October 25, 2016.

[193] Catherine Minto, et al., “The Effect of Clitoral Surgery on Sexual Outcome in Individuals Who Have Intersex Conditions with Ambiguous Genitalia: A Cross-sectional Study.” The Lancet,  April 12, 2003, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4559568/

[194] Nina Callens, et al. “Do Surgical Interventions Influence Psychosexual and Cosmetic Outcomes in Women with Disorders of Sex Development?” ISRN Endocrinology 2012 (2012), Article ID 276742, https://www.hindawi.com/journals/isrn/2012/276742/

[195] Hazel Glen Beh and Milton Diamond, “David Reimer's Legacy: Limiting Parental Discretion,” Cardozo Journal of Law and Gender 12(5) (2005), https://papers.ssrn.com/sol3/papers.cfm?abstract_id=1446966.

[196] Human Rights Watch interview with a urologist, February 23, 2017.

[197] Human Rights Watch interview with a gynecologist, February 3, 2017.

[198] Human Rights Watch interview with a urologist, February 6, 2017.

[199] Human Rights Watch interview with a psychologist, January 30, 2017.

[200] Palm Center, “Re-Thinking Genital Surgeries on Intersex Infants.”

[201] Human Rights Watch interview with a urologist, February 6, 2017.

[202] Human Rights Watch interview with a urologist, February 23, 2017.

[203] Human Rights Watch interview with a urologist, February 6, 2017.

[204] Karkazis, Fixing Sex  (2008).

[205] United Nations Education, Scientific and Cultural Organization (UNESCO), “Universal Declaration on Bioethics and Human Rights,” October 19, 2005, http://portal.unesco.org/en/ev.php-URL_ID=31058&URL_DO=DO_TOPIC&URL_SECTION=201.html

[206] United Nations, Report of the Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health, A/64/272, August 10, 2009, https://documents-dds-ny.un.org/doc/UNDOC/GEN/N09/450/87/PDF/N0945087.pdf?OpenElement

[207] Ibid. 

[208] Ibid. 

[209] Human Rights Watch interview with Mariel K., age 14, October 29, 2016.

[210] Human Rights Watch interview with Thomas A., location withheld, December 6, 2016.

[211] Human Rights Watch interview with Margy K., California, October 29, 2016.

[212] Human Rights Watch interview with a urologist, February 15, 2017.

[213] Human Rights Watch interview with Thomas A., location withheld, December 6, 2016.

[214] Human Rights Watch interview with Thomas A., location withheld, December 6, 2016.

[215] Human Rights Watch interview with Thomas A., location withheld, December 6, 2016.

[216] Human Rights Watch interview with Thomas A., location withheld, December 6, 2016.

[217] For example, a 2012 joint statement by the European Society for Pediatric Urology and the Society of Pediatric Urology of the United States listed “meeting parents' expectations” as one of the three principal objectives of conducting genital surgery. P. Mouriquand et al., “The ESPU/SPU standpoint on the surgical management of Disorders of Sex Development (DSD).”; Sarah Creighton et al., “Timing and Nature of Reconstructive Surgery for Disorders of Sex Development – Introduction,” Journal of Pediatric Urology 8(6) (2012):602-610, http://www.jpurol.com/article/S1477-5131(12)00236-7/abstract.

[218] K Karkazis, A Kon & A Tamar-Mattis,; L. “Genital Surgery for Disorders of Sex Development: Implementing a Shared Decision-making Approach,” Journal of Pediatric Endocrinology and Metabolism (2010), https://www.ncbi.nlm.nih.gov/pubmed/21073122; Laura Hermer, “Paradigms Revisited: Intersex Children, Bioethics, & the Law,” Annals of Health Law 11 (2002), https://pdfs.semanticscholar.org/30c6/61cb453522904a1c860fc68f363c62670c2f.pdf.

[219] Martine Cools et al., “Managing the Risk of Germ Cell Tumourigenesis in Disorders of Sex Development Patients,” Endocrine Development 27 (2014):185-196, https://www.ncbi.nlm.nih.gov/pubmed/25247655.

[220] In its 2013 report, the Australian Senate Community Affairs Committee discusses in depth the controversies over how cancer risk data has been collated and presented, including in the 2006 Consensus Statement. The report is available at: Commonwealth of Australia, Senate Community Affairs References Committee, “Involuntary or coerced sterilization of intersex people in Australia,” October 30, 2013, http://www.aph.gov.au/~/media/Committees/Senate/committee/clac_ctte/involuntary_sterilisation/second_report/report.ashx.

[221] Karkazis et al., “Shared Decision-Making and Children with DSD.”; Anne Tamar-Mattis, “Sterilization and Minors with Intersex Conditions in California Law,” California Law Review (2012), http://www.californialawreview.org/wp-content/uploads/2014/10/Sterilization-and-Minors-with-Intersex-Conditions-in-California-L.pdf.

[222] Lee et al., “Global Disorders of Sex Development Update Since 2006: Perceptions, Approach and Care.”

[223] Palm Center, “Re-Thinking Genital Surgeries on Intersex Infants.”

[224] Human Rights Watch interview with a urologist, February 23, 2017.

[225] Human Rights Watch interview with a gynecologist, March 7, 2017.

[226] Human Rights Watch interview with a urologist, February 23, 2017.

[227] Human Rights Watch interview with a urologist, February 23, 2017.

[228] Dreger, “Intersex Rights,”( 2017); Anne Tamar-Mattis, “Exceptions to the Rule: Curing the Law’s Failure to Protect Intersex Infants,” Berkeley Journal of Gender, Law, and Justice 21(1) (2006), https://interactadvocates.org/wp-content/uploads/2016/01/Exceptions-to-the-Rule-Curing-the-Laws-Failure-to-Protect-Intersex-Infants.pdf; Karkazis, Fixing Sex  (2008) ;Interview with Tiger Devore in Videotape: XXXY (Laleh Soomekh & Porter Gale, 2000), available at: http://www.planetout.com/popcornq/db/getfilm.html?63816 (“I don’t know one intersexed individual who is happy with the treatment they have received from the physicians that they have consulted with over the years – not one! Not one! I have spoken with people internationally, more than a thousand of them. I’m eager for the medical society to present these successful cases, because I can’t find one.”); Marcus de Maria Arana, San Francisco Human Rights Commission, “A Human Rights Investigation into the Medical ‘Normalization’ of Intersex People” (2005), http://sfhrc.org/site/uploadedfiles/sfhumanrights/Committee_Meetings/Lesbian_Gay_Bisexual_Transgender/HRC%20Intersex%20Report.pdf.

[229] Human Rights Watch interview with Bruce P., Illinois, February 7, 2017.

[230] Human Rights Watch interview with Clarissa B., March 2, 2017.

The risk of complications is much higher than 20 percent. Sarah Creighton and L-M Liao, “Changing Attitudes to Sex Assignment in Intersex,” BJU International (2004), (noting one study in which greater than half of women with CAH, most of whom had had genital surgery, reported pain with intercourse and sexual anxiety); Lisandro Ariel Piaggio, “Congenital Adrenal Hyperplasia: Review from a Surgeon’s Perspective in the Beginning of the Twenty-First Century,” Frontiers in Pediatrics (2013) (reporting that in one study, 39 percent of women with CAH who had undergone clitoral surgery “always found it impossible” to have an orgasm; in another study, one-third of patients who had undergone “clitoral reductions” no longer had any identifiable clitoral tissue remaining; in a third study, 46 percent of women with CAH had an unsatisfactory outcome following clitoral surgery. Additionally, studies of vaginoplasty in women with CAH reported that revision surgeries were required for between 77 and 100 percent of patients.); Lee et al., “Consensus Statement on Management of Intersex Disorders.” (reporting rates of gender assignment rejection of approximately 10 percent for individuals with Congenital Adrenal Hyperplasia.)

[231] “It has been hypothesized that body differences associated with DSDs may harm well-being although inconsistently. The high prevalence of normalizing surgery makes it impossible to separate the psychosocial impact of body differences and surgical management.” Lee et al., “Global Disorders of Sex Development Update Since 2006: Perceptions, Approach and Care.”

[232] Pierre Mouriquand, et al., “Surgery in disorders of sex development (DSD) with a gender issue: If (why), when, and how?” Journal of Pediatric Urology 12(3) (2016), doi: 10.1016/j.jpurol.2016.04.001.

[233] Human Rights Watch interview with a gynecologist, February 3, 2017.

[234] Human Rights Watch interview with a urologist, February 23, 2017.

[235] See P.S. Furtado et al., “Gender Dysphoria Associated with Disorders of Sex Development,” Nature Reviews Urology 9 (November 2012):620-627, doi:10.1038/nrurol.2012.182, (reporting gender dysphoria in approximately 5 percent of individuals with Complete Androgen Insensitivity Syndrome, 10 percent of individuals with Congenital Adrenal Hyperplasia; 12.5 percent of individuals with Ovotesticular DSD; 20 percent of individuals with Partial Androgen Insensitivity Syndrome; 29 percent of individuals with mixed gonadal dysgenesis; 39 percent of individuals with cloacal exstrophy; 57 percent of individuals with 17-beta-hydroxysteroid dehydrogenase deficiency; and 63 percent of individuals with 5-alpha-reductase deficiency); Lee et al., “Consensus Statement on Management of Intersex Disorders,” (reporting rates of gender assignment rejection of approximately 10 percent for individuals with Congenital Adrenal Hyperplasia; 25 percent for individuals with Partial Androgen Insensitivity Syndrome, androgen biosynthetic defects, and incomplete gonadal dysgenesis; 35 percent for individuals with cloacal exstrophy; and 60 percent for individuals with 5-alpha-reductase deficiency).

[236] Human Rights Watch interview with a urologist, February 23, 2017.

[237] Human Rights Watch interview with a urologist, February 23, 2017. One of the few available studies looking at psychological outcomes reported marked psychological distress “with rates of suicidal tendencies and self-harming behavior on a level comparable to non-DSD women with a history of physical or sexual abuse” among intersex adults who had received normalizing interventions.  Karsten Schützmann et al., “Psychological Distress, Self-Harming Behavior, and Suicidal Tendencies in Adults with Disorders of Sex Development,” Archives of Sexual Behavior 38(1) (2009):16–33, https://www.ncbi.nlm.nih.gov/pubmed/17943433.

[238] Human Rights Watch interview with a urologist, February 15, 2017.

[239]Human Rights Watch interview with a urologist, February 15, 2017.

[240] Human Rights Watch interview with a urologist, February 15, 2017.

[241] Lee et al., “Global Disorders of Sex Development Update Since 2006: Perceptions, Approach and Care.”

[242] Pierre Bougnères, “Deferring Surgical Treatment of Ambiguous Genitalia into Adolescence in Girls with 21-Hydroxylase Deficiency: A Feasibility Study,” International Journal of Pediatric Endocrinology 2017(3) (2017), DOI 10.1186/s13633-016-0040-8.

[243] Human Rights Watch interview with Thomas A., location withheld, December 6, 2016.

[244] Human Rights Watch interview with Kate R., location withheld, December 4, 2017.

[245] Human Rights Watch interview with Wendy N., location withheld, January 28, 2017.

[246] Human Rights Watch interview with Kate R., location withheld, December 4, 2017.

[247] Human Rights Watch, ‘Like Walking Through a Hailstorm’: Discrimination Against LGBT Youth in US Schools, December 7, 2016, https://www.hrw.org/report/2016/12/07/walking-through-hailstorm/discrimination-against-lgbt-youth-us-schools.

[248] These surgeries, however, do not always result in the “normal”-looking genitals they aim to create. Lisandro Ariel Piaggio, “Congenital Adrenal Hyperplasia: Review from a Surgeon’s Perspective in the Beginning of the Twenty-First Century,” Frontiers in Pediatrics 1(50) (2013), doi: 10.3389/fped.2013.00050, (noting one study in which 46 percent of clitoral surgery patients had an unacceptable anatomical result). Human Rights Watch documented such cases as well. For example, Lina, a 24-year-old intersex woman who underwent surgery as an infant, now suffers from pelvic floor muscle failure and is required to visit a physical therapist to treat it. “The first visit I had with the physical therapist, she asked me if I actually feel female—then she looked at my genitalia and said ‘Wow! I don’t even know what I’m looking at here!’ and that was completely triggering for me so I can’t go back,” Lina said.

[249] Historian Alice Dreger acknowledges that “cultural attachment to the idea of a clear, simple division between (only) two sexes runs deep.” However, she argues, the proposal to avoid social stigma by instead making the body conform to norms takes the cultural attachment to its logical extreme. In 20 years of researching medical care for intersex people in the US, she notes: “Many physicians believe that there’s nothing we can do about that cultural anchor – You can’t change society, they say.” Alice Dreger, “Intersex Rights,” aeon magazine, April 6, 2017, https://aeon.co/essays/people-born-intersex-have-a-right-to-genital-integrity?utm_source=Aeon+Newsletter&utm_campaign=a7bd262bd3-EMAIL_CAMPAIGN_2017_04_03&utm_medium=email&utm_term=0_411a82e59d-a7bd262bd3-69382885.

[250] Human Rights Watch interview with Judy G., New York November 30, 2017.

[251] Human Rights Watch interview with Patty P., California, October 27, 2016.

[252] Human Rights Watch interview with a urologist, February 15, 2017.

[253] Human Rights Watch interview with an endocrinologist, February 23, 2017.

[254] Human Rights Watch interview with an endocrinologist, February 23, 2017.

[255] The World Professional Association for Transgender Health (WPATH),“Standards of Care for the Health of Transsexual, Transgender, and Gender Nonconforming People Version 7.”

[256] Ibid.

[257] Peter Lee, et al., “Review of Recent Outcome Data of Disorders of Sex Development (DSD): Emphasis on Surgical and Sexual Outcomes,” Journal of Pediatric Urology 8(6) (2012): 611-615 http://dx.doi.org/10.1016/j.jpurol.2012.10.017; L-M Liao et al., “Determinant Factors of Gender Identity: A Commentary,” Journal of Pediatric Urology  8(6) (2012): 597-601, http://dx.doi.org/10.1016/j.jpurol.2012.09.009.

[258] Human Rights Watch interview with a gynecologist, February 3, 2017.; Some recently-published studies document clitorectomies that happened as recently as the late 1990s. See: Heino Meyer-Bahlburg, “Syndrome-Related Stigma in the General Social Environment as Reported by Women with Classical Congenital Adrenal Hyperplasia,” Archives of Sexual Behavior 46(2) (2017):341–351, doi:10.1007/s10508-016-0862-8.

[259] Human Rights Watch interview with a urologist, February 23, 2017.

[260] Human Rights Watch interview with an endocrinologist, February 1, 2017.

[261] Human Rights Watch interview with an endocrinologist, February 27, 2017.

[262] Creighton and Liao, “Changing Attitudes to Sex Assignment in Intersex.”

[263] The Consortium on Disorders of Sex Development, “Clinical Guidelines for the Management of Disorders of Sex Development in Childhood and Handbook for Parents,” p.25, 28; Milton Diamond and Keith Sigmundson, “Management of Intersexuality: Guidelines for Dealing with Individuals with Ambiguous Genitalia,” Archives of Pediatric and Adolescent Medicine 151 (1997):1046-1050, http://www.isna.org/library/ManagementofIntersex.pdf; Creighton and Liao, “Changing Attitudes to Sex Assignment in Intersex.”; Intersex Society of North America, “How Can You Assign a Gender (Boy or Girl) Without Surgery?, undated, http://www.isna.org/faq/gender_assignment.

[264] Human Rights Watch interview with a urologist, February 15, 2017.

[265] P. Mouriquand et al., “The ESPU/SPU standpoint on the surgical management of Disorders of Sex Development (DSD).”; Justine Schober, “Early Feminizing Genitoplasty or Watchful Waiting,” Journal of Pediatric and Adolescent Gynecology 11(3) (1998): 154-156,  http://dx.doi.org/10.1016/S1083-3188(98)70267-0; Claudia Wiesemann et al., “Ethical Principles and Recommendations for the Medical Management of Differences of Sex Development (DSD)/Intersex in Children and Adolescents,” European Journal of Pediatrics 169(6) (2009):671-679, doi: 10.1007/s00431-009-1086-x; Sarah M. Creighton, “Long-term Sequelae of Genital Surgery” in Paediatric and Adolescent Gynaecology: A Multidisciplinary Approach ed. Adam H. Balen et al. (Cambridge University Press:2004). 

[266] Human Rights Watch interview with Abigail L., February 28, 2017.

[267] Human Rights Watch interview with Abigail L., February 28, 2017.

[268] Human Rights Watch interview with Gina K., February 28, 2017.

[269] Wang and Poppas, “Surgical Outcomes and Complications of Reconstructive Surgery in the Female Congenital Adrenal Hyperplasia Patient: What Every Endocrinologist Should Know," Journal of Steroid Biochemistry and Molecular Biology.; Zeina M. Nabhan, et al., “Urinary Tract Infections in Children with Congenital Adrenal Hyperplasia,” Journal of Pediatric Endocrinology and Metabolism vol. 19 (2006).

[270] An estimated 0.7 percent of youth ages 13 to 17, or 150,000 youth, identify as transgender in the United States. Jody L. Herman, Andrew R. Flores, Taylor N.T. Brown, Bianca D.M. Wilson, and Kerith J. Conron, “Age of Individuals Who Identify as Transgender in the United States,” The Williams Institute, January 2017, https://williamsinstitute.law.ucla.edu/research/transgender-issues/new-estimates-show-that-150000-youth-ages-13-to-17-identify-as-transgender-in-the-us/

[271] Furtado et al., “Gender Dysphoria Associated with Disorders of Sex Development.” (reporting a rate of eventual sex assignment rejection in up to 10 percent of individuals with CAH).

[272] For example, a leading pediatric urology textbook explains that, "...among those infants with severe virilization, the possibility of an eventual male sexual identity becoming established may mean that any irreversible feminizing procedure carried out in infancy may, in the fullness of time, be regretted." “…the parents should understand, and the surgical consent form should specify that the long-term outcome of feminizing genitoplasty has not been fully evaluated and that no guarantee can be given as to the ultimate gender identity of the child.” Furthermore, the authors note that phallus construction surgical techniques, or “Total Penile Construction” are “mainly used in adults who have sustained the accidental loss of their penis.” The authors state that: “Although the resulting penis…can be cosmetically satisfactory, complications are common…. Although the availability of such formidable techniques is advantageous for adults suffering penile trauma, the complexity of the procedure, suboptimal cosmesis and function, and significant postoperative morbidity confine their potential applications among children to a few, highly selected individuals.” A. Barry Belman, Lowell King, and Stephen A. Kramer, Guide to Clinical Pediatric Urology (Taylor and Francis, 2002).

[273]Human Rights Watch interview with a psychologist, November 21, 2016.

[274]Human Rights Watch interview with an endocrinologist, February 23, 2017.

[275]Human Rights Watch interview with an endocrinologist, February 1, 2017.

[276] "Reoperations After Failed Hypospadias Repair: How Prior Surgery Impacts Risk for Additional Complications," The Societies for Pediatric Urology, 2016, http://spuonline.org/abstracts/2016/MP34.cgi; W. Snodgrass and NC Bush, "Re-operative Urethroplasty After Failed hypospadias Repair: How Prior Surgery Impacts Risk for Additional Complications," Journal of Pediatric Urology 13(3) (2017):289.e1-289.e6, http://www.sciencedirect.com/science/article/pii/S1477513116303904; James R. Craig et al., "Management of Adults with Prior Failed Hypospadias Surgery," Translational Andrology and Urology 3(2) (2014):196-204, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4708161/; Yu-huan Lu et al., "Factors Associated with Reoperation in Hypospadias Surgery--A Nationwide, Population-based Study," Asian Journal of Surgery 40(2) (2017):116-122,  http://www.sciencedirect.com/science/article/pii/S1015958415001153.

[277] Human Rights Watch interview with a gynecologist, March 7, 2017.

[278] Human Rights Watch interview with a gynecologist, March 7, 2017.

[279] Human Rights Watch interview with a urologist, February 23, 2017.

[280] Human Rights Watch interview with an endocrinologist, February 23, 2017.

[281] Human Rights Watch interview with an endocrinologist, February 23, 2017.

[282] Human Rights Watch interview with an endocrinologist, February 27, 2017.

[283] Human Rights Watch interview with an endocrinologist, February 27, 2017.

[284] Human Rights Watch interview with a urologist, February 23, 2017.

[285] Human Rights Watch interview with a urologist, February 23, 2017.

[286] Human Rights Watch interview with an endocrinologist, February 27, 2017.

[287] Human Rights Watch interview with a gynecologist, February 3, 2017.

[288] Human Rights Watch interview with an endocrinologist, March 3, 2017.

[289] Human Rights Watch interview with an endocrinologist, March 3, 2017.

[290] Human Rights Watch interview with a urologist, February 15, 2017.

[291] Human Rights Watch interview with a urologist, February 6, 2017.

[292] Human Rights Watch interview with a urologist, February 6, 2017.

[293] Human Rights Watch interview with a psychologist, November 21, 2016.

[294] Human Rights Watch interview with a urologist, February 15, 2017.

[295] Human Rights Watch interview with an endocrinologist, February 27, 2017.

[296] Human Rights Watch interview with a urologist, February 23, 2017.

[297] Human Rights Watch interview with a psychologist, January 30, 2017.

[298] Human Rights Watch interview with a psychologist, January 30, 2017.

[299] Mireya Navarro, “When Gender Isn't a Given,” The New York Times, September 19, 2004, http://www.nytimes.com/2004/09/19/fashion/when-gender-isnt-a-given.html

[301] Human Rights Watch interview with a urologist, February 15, 2017.

[302] Human Rights Watch interview with an endocrinologist, February 1, 2017.

[303] Human Rights Watch interview with an endocrinologist, February 1, 2017.

[304] Human Rights Watch interview with a gynecologist, February 3, 2017.

[305] Human Rights Watch interview with a urologist, February 23, 2017.

[306] Human Rights Watch interview with a urologist, February 23, 2017.

[307] Human Rights Watch interview with a urologist, February 23, 2017.

[308] Human Rights Watch interview with a urologist, February 23, 2017.

[309] Human Rights Watch interview with a psychologist, January 30, 2017.

[310] Human Rights Watch interview with a urologist, February 6, 2017.

[311] Human Rights Watch interview with a mental health social worker., location withheld, December 4, 2016.

[312] Human Rights Watch interview with mental health social worker, location withheld, December 4, 2016.

[313] Human Rights Watch interview with mental health social worker, location withheld, December 4, 2016.

[314] Human Rights Watch interview with a gynecologist, March 7, 2017.

[315] Human Rights Watch interview with an endocrinologist, February 23, 2017.

[316] Human Rights Watch interview with an endocrinologist, March 3, 2017.

[317] Human Rights Watch interview with an endocrinologist, March 3, 2017.

[318] Human Rights Watch interview with a gynecologist, February 3, 2017.

[319] A mental health provider on a DSD team echoed this argument, drawing a parallel between choosing surgery for an intersex child and choosing to raise the child in a religion versus atheist—a parallel, he admitted, was imperfect. Human Rights Watch interview with a psychologist, January 30, 2017.

[320] Lee et al., “Consensus Statement on Management of Intersex Disorders.”; Lee et al., “Global Disorders of Sex Development Update Since 2006: Perceptions, Approach and Care.”

[321] United Nations World Health Organization (WHO), “Genomic Resource Center: Patient Support Groups,” http://www.who.int/genomics/public/patientsupport/en/

[322] Human Rights Watch interview with Mariel K., October 29, 2016.

[324] AIS-DSD Support Group, http://aisdsd.org/

[326] Human Rights Watch interview with a gynecologist, February 3, 2017.

[327] Human Rights Watch interview with an endocrinologist, February 1, 2017.

[328] Human Rights Watch interview with a psychologist, January 30, 2017.

[329] Human Rights Watch interview with Molly M., location withheld, January 10, 2017.

[330] Human Rights Watch interview with Seth T., location withheld, December 5, 2016.

[331] Human Rights Watch interview with Christine T., location withheld, December 5, 2016.

[332] Human Rights Watch interview with Margy K., California, October 29, 2016.

[333] Human Rights Watch interview with Patricia P., location withheld, December 4, 2016.

[334] Human Rights Watch interview with Thomas A., location withheld, December 6, 2016.

[335] Human Rights Watch interview with Ava A., Texas, January 9, 2017.

[336] Human Rights Watch interview with Kate R., location withheld, December 4, 2017.

[337] Human Rights Watch interview with Kate R., location withheld, December 4, 2017.

[338] Human Rights Watch interview with Jackie N., California, October 25, 2016.

[339] Human Rights Watch interview with Jackie N., California, October 25, 2016.

[340] Human Rights Watch interview with Neha K., California, October 24, 2016.

[341] Human Rights Watch interview with Meredith N., Texas, January 8, 2017.

[342] Human Rights Watch interview with Judy G., New York November 30, 2017.

[343] Human Rights Watch interview with Jamie J., New York, December 3, 2016.

[344] Human Rights Watch interview with Patrick L., New York, October 29, 2017.

[345] Human Rights Watch interview with Patricia P., location withheld, December 4, 2016.

[346] Human Rights Watch interview with Jackie N., California, October 25, 2016.

[347] United Nations World Health Organization, et. al., “Eliminating Forced, Coercive and Otherwise Involuntary Sterilization—An Interagency Statement.”

[348] Office of the High Commissioner for Human Rights, joint statement, “United Nations entities call on States to act urgently to end violence and discrimination against lesbian, gay, bisexual, transgender and intersex (LGBTI)1 adults, adolescents and children,” September 2015, http://www.ohchr.org/Documents/Issues/Discrimination/Joint_LGBTI_Statement_ENG.PDF (accessed April 22, 2017).

[349] Government of Malta, “Gender Identity, Gender Expression and Sex Characteristics Act.”

[350] The United Nations Committee Against Torture (CAT), which reviews state compliance with the Convention Against Torture, has referenced several of the Conventions in its analysis of intersex surgeries. These are: article 2 (legislative, administrative, judicial or other measures to prevent acts of torture), article 10 (education and information regarding the prohibition against torture included in the training of…medical personnel), article 12 (systematic review [of] methods and practices with a view to preventing any cases of torture), article 14 (legal redress for torture) and article 16 (prevention of acts of cruel, inhuman or degrading treatment) in its analysis of intersex surgeries. Some patterns emerge in the committee’s critique of state practices and recommendations for action. The Committee against Torture, Concluding observations of the Committee against Torture, Germany, CAT/C/DEU/CO/5 (12 December 2011); Committee against Torture Concluding observations on the seventh periodic report of Switzerland, CAT/C/CHE/CO/7, 7 September 2015; Committee against Torture Concluding observations on the sixth periodic report of Austria, CAT/C/AUT/CO/6 (27 January 2016); Committee against Torture Concluding observations on the fifth periodic report of China with respect to Hong Kong, China, CAT/C/CHN-HKG/CO/5 (3 February 2016); Committee against Torture Concluding observations on the combined sixth and seventh periodic reports of Denmark, CAT/C/DNK/CO/6-7 (4 February 2016); Committee against Torture, Concluding observations on the seventh periodic report of France, CAT/C/FRA/CO/7 (10 June 2016).

[351] United Nations Human Rights Council, “Report of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Juan E. Méndez.”

[352] “WHO, OHCHR, UN Women, UNAIDS, UNDP, UNFPA, UNICEF, Eliminating forced, coercive and otherwise involuntary sterilization: An Interagency Statement,” The World Health Organiation (2014), http://www.who.int/reproductivehealth/publications/gender_rights/eliminating-forced-sterilization/en/

[353] Human Rights Watch interview with an endocrinologist, February 23, 2017.

[354] Human Rights Watch interview with an endocrinologist, February 27, 2017.

[355] Human Rights Watch interview with a psychologist, January 30, 2017.

[356] Human Rights Watch interview with a psychologist, January 30, 2017.

[357] The Center for Human Rights & Humanitarian Law and the Anti-Torture Initiative, “Torture in Healthcare Settings: Reflections on the Special Rapporteur on Torture’s 2013 Thematic Report,” March 2014, http://antitorture.org/wp-content/uploads/2014/03/PDF_Torture_in_Healthcare_Publication.pdf

[358] Human Rights Watch interview with a urologist, February 15, 2017.

[359] Human Rights Watch interview with a urologist, February 23, 2017.

[360] Human Rights Watch interview with a gynecologist, February 3, 2017.

[361] Human Rights Watch interview with a gynecologist, February 3, 2017.

[362] United Nations Committee against Torture, “Consideration of Reports Submitted by States Parties under Article 19 of the Convention,” CAT/C/DEU/CO/5.

[363] United Nations Committee against Torture, “Concluding Observations on the Sixth Periodic Report of Austria,” CAT/C/AUT/CO/6, January 27, 2016, http://tbinternet.ohchr.org/_layouts/treatybodyexternal/Download.aspx?symbolno=CAT/C/AUT/CO/6&Lang=En

[364] United Nations Committee against Torture, “Concluding Observations on the Fifth Periodic Report of China with Respect to Hong Kong, China,” CAT/C/CHN-HKG/CO/5, February 3, 2016.

[365] United Nations Human Rights Council, “Report of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Juan E. Méndez,” A/HRC/22/53, February 1, 2013

[366] Trisha Korioth, “AAP Reaffirms Endorsement of Convention on the Rights of the Child,” AAP News, April 2, 2001, http://www.aappublications.org/content/18/4/176.full.

[367] United Nations Committee on the Rights of the Child, “Concluding observations on the fifth period report of New Zealand,” CRC/C/NZL/CO/5, September 30, 2016.

[368] United Nations Committee on the Rights of the Child, “Concluding observations on the second periodic report of South Africa,” CRC/C/ZAF/CO/2, September 30, 2016.

[369] United Nations Committee on the Rights of the Child, “Concluding observations on the combined second to fourth periodic reports of Switzerland,” CRC/C/CHE/CO/2-4, February 26, 2015.

[370] United Nations Committee on the Rights of the Child, “Concluding observations on the combined fourth and fifth periodic reports of Chile,” CRC/C/CHL/CO/4-5, October 30, 2015.

[371] United Nations Committee on the Rights of the Child, “Concluding observations on the fifth periodic report of France,” CRC/C/FRA/CO/5, 29 January 29, 2016.

[372] United Nations Committee on the Rights of the Child, “Concluding observations on the combined third and fourth periodic reports of Ireland,” CRC/C/IRL/CO/3-4, January 29, 2016.

[373] United Nations Committee on the Rights of the Child, “Concluding observations on the fifth periodic report of the United Kingdom of Great Britain and Northern Ireland,” CRC/C/GBR/CO/5, June 3, 2016.

[374] United Nations Committee on the Rights of the Child. “Concluding observations on the third to fifth periodic reports of Nepal,” CRC/C/NPL/CO/3-5, June 3, 2016.

[375] Joint general recommendation No. 31 of the United Nations Committee on the Elimination of Discrimination against Women/general comment No. 18 of the Committee on the Rights of the Child on harmful practices, CEDAW/C/GC/31-CRC/C/GC/18.

[376] United Nations Committee on the Elimination of Discrimination against Women, “Concluding observations on the sixth periodic report of the Netherlands,” CEDAW/C/NLD/CO/6, November 18, 2016.

[377] United Nations Committee on the Elimination of Discrimination against Women, “Concluding observations on the combined fourth and fifth periodic reports of Switzerland,” CEDAW/C/CHE/CO/4-5, November 18, 2016.

[378] United Nations Committee on the Rights of the Child, “Concluding observations on the fifth periodic report of France,” CRC/C/FRA/CO/5, para. 48.

[379] United Nations Committee against Torture, “Concluding observations on the seventh periodic report of France,” CAT/C/FRA/CO/7, para. 35.

[380] United Nations Committee on the Elimination of Discrimination against Women, “Concluding observations on the combined seventh and eighth periodic reports of France,” CEDAW/C/FRA/CO/7-8, July 22, 2016.

[381] United Nations Committee against Torture, “Consideration of Reports Submitted by States Parties under Article 19 of the Convention,” CAT/C/DEU/CO/5. para. 20.

[382] United Nations Committee on the Rights of Persons with Disabilities. “Concluding observations on the initial report of Germany,” CRPD/C/DEU/CO/1, May 13, 2015.

[383] United Nations Committee on the Rights of Persons with Disabilities. “Concluding observations on the initial report of Chile,” CRPD/C/CHL/CO/1, April 13, 2016.

[384] United Nations Committee on the Rights of Persons with Disabilities, “Concluding observations on the initial report of Italy,” CRPD/C/ITA/CO/.1, August 31, 2016.

[385] United Nations Human Rights Council, “Report of the Special Rapporteur on Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, Juan E. Méndez.”

[386] The Yogyakarta Principles on The Application of International Human Rights Law in relation to Sexual Orientation and Gender Identity, http://www.yogyakartaprinciples.org/.

[387] Expert Declaration of Deanna Adkins, M.D., United States District Court for the middle district of North Carolina, Carcaño et al. v. McCrory, et al., https://www.aclu.org/sites/default/files/field_document/AdkinsDecl.pdf

[388] United Nations Committee on Economic, Social and Cultural Rights, “General Comment No. 14: The Right to the Highest Attainable Standard of Health (Art. 12),” http://www.refworld.org/pdfid/4538838d0.pdf.

[389] United Nations Committee on Economic, Social and Cultural Rights, “Concluding Observations on Australia, June 23, 2017,” E/C.12/AUS/CO/5.

[390] Commonwealth of Australia, Senate Community Affairs References Committee, “Involuntary or coerced sterilization of intersex people in Australia,” October 30, 2013, http://www.aph.gov.au/~/media/Committees/Senate/committee/clac_ctte/involuntary_sterilisation/second_report/report.ashx.

[391] United Nations Committee on Economic, Social and Cultural Rights, “Concluding Observations on the Netherlands, June 23, 2017,” E/C.12/NLD/CO/6.

[392] The National Institutes of Health, the National Institute of Diabetes & Digestive & Kidney Diseases, Research Progress Report and Strategic Plan for Pediatric Urology (2006).

[393] Lee et al., “Consensus Statement on Management of Intersex Disorders.”

[394] Lee et al., “Global Disorders of Sex Development Update Since 2006: Perceptions, Approach and Care.”

[395] Policy Statement—Ritual Genital Cutting of Female Minors,” American Academy of Pediatrics 126(1) (2010).

[396] The American Academy of Pediatrics, Committee on Adolescents, “Office-Based Care for Lesbian, Gay, Bisexual, Transgender, and Questioning Youth,” 2013. http://pediatrics.aappublications.org/content/132/1/e297

[398] American Congress of Obstetricians and Gynecologists, “Breast and Labial Surgery in Adolescents,” January 2017. https://www.acog.org/Resources-And-Publications/Committee-Opinions/Committee-on-Adolescent-Health-Care/Breast-and-Labial-Surgery-in-Adolescents

[399] United States Department of State, Press Statement, “In Recognition of Intersex Awareness Day,” October 26, 2016. https://2009-2017.state.gov/r/pa/prs/ps/2016/10/263578.htm

[400] Skinner v. Okl. ex rel Williamson, 316 U.S. 535 (1942).

[401] A. Wisniewski and T. Mazur, “46,XY DSD with Female or Ambiguous External Genitalia at Birth due to Androgen Insensitivity Syndrome, 5-Reductase-2 Deficiency, or 17-Hydroxysteroid Dehydrogenase Deficiency: A Review of Quality of Life Outcomes,” International Journal of Pediatric Endocrinology (2009), OI:10.1155/2009/567430.

[402] Anne Tamar-Mattis, “Sterilization and Minors with Intersex Conditions in California Law.”

[403] Lee et al., “Consensus Statement on Management of Intersex Disorders.”

[404] C. Murphy et al., “Ambiguous Genitalia in the Newborn: An Overview and Teaching Tool,” Journal of Pediatric Adolescent Gynecology 24(5) (2011):236-250, http://dx.doi.org/10.1016/j.jpag.2011.02.004.

[405] Cools et al., “Managing the Risk of Germ Cell Tumourigenesis in Disorders of Sex Development Patients,” Endocrine Development.

[406] Anne Tamar-Mattis, “Sterilization and Minors with Intersex Conditions in California Law,” California Law Review (2012); Karkazis et al., “Shared Decision-Making and Children with DSD,” Journal of Pediatric Endocrinology and Metabolism (2010).

[407] Cohen-Kettenis, “Psychosocial and Psychosexual Aspects of Disorders of Sex Development,” Best Practice & Research Clinical Endocrinology & Metabolism (2010).

[408] In re Moe, 432 N.E.2d 712, 716-17 (Mass. 1982); In re Terwilliger, 450 A.2d 1376, 1382 (Pa. Super. Ct. 1982); In re Matter of A.W., 637 P.2d 366 (Supr.Ct.Colo. 1981); In re Grady, 85 N.J. 235, 426 A.2d 467 (1981); 34-B M.R.S. §§ 7001-7017 (“Due Process in Sterilization Act of 1982”).

[411] For a fuller description of a process that would protect the rights of the intersex child see: Anne Tamar-Mattis, “Sterilization and Minors with Intersex Conditions in California Law.”

[412] Heather Byers, et al., “Unexpected ethical dilemmas in sex assignment in 46,XY DSD due to 5-alpha reductase type 2 deficiency,” American Journal of Medical Genetics, June 2017, 175(2):260-267, https://www.ncbi.nlm.nih.gov/pubmed/28544750# (accessed July 3, 2017).

[413] 18 U.S.C. § 116.

[414] Cheryl Chase, “Cultural Practice” or “Reconstructive Surgery”? U.S. Genital Cutting, the Intersex Movement, and Medical Double-Standards,” in Genital Cutting and Transnational Sisterhood ed. Stanlie M. James et al. (University of Illinois press, 2002), p.12;6 Kate Haas, “Who Will Make Room for the Intersexed?,” American Journal of Law and medicine 41 (2004); Sylvan Fraser, “Constructing the Female Body: Using Female Genital Mutilation Law to Address Genital-Normalizing Surgery on Intersex Children in the United States,” International Journal of Human Rights in Healthcare 52 (2016).

[415] N.Y. C.L.S. Penal § 130.85.

[416] N.D. Cent. Code § 12.1-36-01.

[417] Wis. Stat. Ann. § 146.35.

[418] Stat. Ann. Tit. 21 § 760.

[419] Jo Becker, Campaigning For Children: Strategies for Advancing Children’s Rights. (Stanford University Press, 2017).

[420] Nancy Ehrenreich, “Intersex Surgery, Female Genital Cutting, and the Selective Condemnation of “Cultural Practices,” Harvard Civil Rights-Civil Liberties Law Review. Vol. 40(1) (2005), http://www.law.harvard.edu/students/orgs/crcl/vol40_1/ehrenreich.pdf

[421] “FGC” or “Female Genital Cutting” is an alternative term used for FGM.

[422] Ibid.

[423] I.W. Gregorio, “Should Surgeons Perform Irreversible Genital Surgery on Children?” Newsweek, April 26, 2017, http://www.newsweek.com/should-surgeons-perform-irreversible-genital-surgery-children-589353.

[424] Edward Raab, “The Parameters of Informed Consent,” Transactions of the American Ophthalmological Society, vol.102 (2004):35-45, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1280103/#b12-tao102pg225

[425] See, e.g., NY Pub. Health L. § 2805-D; 40 PA Cons. Stat. Ann. § 1303.504(b); R.C.W. 7.70.050(3).

[426] American Academy of Pediatrics Committee on Bioethics, “Informed Consent in Decision-Making in Pediatric Practice,” Pediatrics (2016).

[427] Ibid.

[428] American Medical Association, “Report of the Board of Trustees: B of T Report 7-I-16: Supporting Autonomy for Patients with Differences of Sex Development (DSD) (Resolution 3-A-16),” https://assets.ama-assn.org/sub/meeting/documents/i16-bot-07.pdf.

[429] Such a statement would bring AAP policy regarding children with atypical sex characteristics in line with existing AAP policy on Assent, Informed Permission and Consent, and on FGM.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

(Hong Kong) – The Chinese government should immediately abolish a secretive detention system used to coerce confessions from corruption suspects. The Communist Party-run system, known as shuanggui, has no basis under Chinese law but is a key component of President Xi Jinping’s anti-corruption campaign.

“President Xi has built his anti-corruption campaign on an abusive and illegal detention system,” said Sophie Richardson, China director at Human Rights Watch. “Torturing suspects to confess won’t bring an end to corruption, but will end any confidence in China’s judicial system.”

The Chinese government should immediately abolish a secretive detention system used to coerce confessions from corruption suspects.

The 102-page report, “‘Special Measures’: Detention and Torture in Chinese Communist Party’s Shuanggui System,” details abuses against shuanggui detainees, including prolonged sleep deprivation, being forced into stress positions for extended periods of time, deprivation of water and food, and severe beatings. Detainees are also subject to solitary and incommunicado detention in unofficial detention facilities. After “confessing” to corruption, they are typically brought into the criminal justice system, convicted, and sentenced to often lengthy prison terms.

The report is based on 21 Human Rights Watch interviews with four former shuanggui detainees, as well as family members of detainees; 35 detailed accounts from detainees culled from over 200 Chinese media reports; and an analysis of 38 court verdicts from across the country. While there have been commentaries and analyses on the shuanggui system, the Human Rights Watch report is the first to contain firsthand accounts from detainees, as well as drawing on a wide variety of secondary, official sources.

Shuanggui not only further undermines China’s judiciary – it makes a mockery of it.

Sophie Richardson

China Director, Human Rights Watch

The Chinese Communist Party’s Central Commission for Discipline Inspection (CCDI) oversees the shuanggui system, to which all of the party’s 88 million members are subject. The CCDI and its lower-level offices, local Commissions for Discipline Inspection (CDIs), typically target government officials, but those detained also include bankers, university officials, and entertainment industry figures, among others. Bo Xilai, a former member of the party’s powerful Politburo, was reportedly held under shuanggui, where he said he confessed under “improper pressure” and was later sentenced to life in prison.

The start of a shuanggui investigation is often marked by an individual’s disappearance – family members are given no notification of the person’s detention or location, no information about the alleged infraction, or the length of detention. Detainees have no access to lawyers. Although there are time limits for shuanggui, CDI investigators can seek repeated extensions, permitting detainees to be held indefinitely, often until they confess. Shuanggui facilities are typically rooms in hostels with special features, such as padded walls or a lack of windows, to prevent suicides or escapes. Detainees are guarded round-the-clock by shifts of officials, often put together in an ad hoc fashion for this purpose, and subjected to interrogations by CDI officers.
 

© 2016 Human Rights Watch

A former shuanggui detainee told Human Rights Watch, “If you sit you have to sit for 12 hours straight, if you stand then you have to stand for 12 hours as well. My legs became swollen, and my buttocks were raw and started oozing pus.”

While President Xi has characterized the fight against corruption as a “matter of life and death” for the Communist Party, the same is true for shuanggui detainees: there have been at least 11 deaths in shuanggui custody reported by the media since 2010. In most cases, authorities claimed these were suicides, but family members often suspected mistreatment, and the lack of comprehensive, impartial investigations into these deaths deepens these suspicions. While former detainees reported that the harsh conditions in shuanggui prompted suicidal thoughts, they also said the constant surveillance and the room’s modifications, designed to prevent suicide attempts, made it difficult to put such thoughts into action.

Some CDIs, concerned about the reputational damage caused by deaths in custody, have partnered with hospitals and doctors to provide medical care for detainees whom the CDIs know will be subjected to torture and other ill-treatment.

CDIs are supposed to hand over evidence of crimes to the procuratorate, the state investigators and prosecutors who are responsible for investigating official crimes. Instead, Human Rights Watch found that procurators work together with CDI officers and participate directly in shuanggui. Such “joint investigations” extract confessions during shuanggui – where detainees have no procedural protections – and then use those confessions in formal legal proceedings. If in those proceedings detainees retract their confessions, claiming that they were made under duress, the procurators typically threaten to send them back to shuanggui. Judges commonly reject detainee objections in court on the grounds that shuanggui and its practices are outside of the scope of the judicial system.

“In shuanggui corruption cases, the courts function as rubber stamps, lending credibility to an utterly illegal Communist Party process,” Richardson said. “Shuanggui not only further undermines China’s judiciary – it makes a mockery of it.”

The shuanggui system has been a highly effective tool for Communist Party investigators: once they obtain a confession, there is little suspects can do to exonerate themselves. Acquittals are extremely rare, and, except in cases of detainee deaths, few investigators face punishments for abuses. Some interviewees told Human Rights Watch that those who tormented them and their families were promoted for their “effectiveness” in handling corruption cases.

China has a serious problem with corruption, but successfully combating it requires an independent judicial system, a free media, and robust protections for the rights of suspects, Human Rights Watch said. A crucial step is the abolition of shuanggui.

“Eradicating corruption won’t be possible so long as the shuanggui system exists,” Richardson said. “Every day this system threatens the lives of party members and underscores the abuses inherent in President Xi’s anti-corruption campaign.”
 

 

Posted: January 1, 1970, 12:00 am

(Dakar, September 4, 2015) – The trial of the former Chadian dictator Hissène Habré on charges of crimes against humanity, war crimes, and torture will begin in earnest on September 7, 2015.

The long-awaited trial of Hissène Habré, was adjourned almost as soon as it was opened, as an outburst from the former dictator of Chad caused a scene in the courtroom.

When the landmark trial before the Extraordinary African Chambers in the Senegal court system formally opened on July 20, Habré had to be removed from court after an outburst. Habré’s lawyers then refused to appear and the trial was adjourned, giving new court-appointed lawyers time to study the case.  

“After 25 years of campaigning and 45 days waiting patiently, the survivors will finally get their day in court,” said Reed Brody, counsel at Human Rights Watch who has worked with the victims since 1999. “Hissène Habré may try to create more disturbances, but he does not get a veto on whether he should be tried, or if the victims get justice.”

Habré has refused to communicate with the court-appointed lawyers, and it is expected that he will try to have them taken off the case. The president of the court, Gberdao Gustave Kam, has made clear, however, that in keeping with Senegalese law and international practice, the lawyers are needed to safeguard the rights of the accused and the integrity of the proceedings.

Habre is accused of tens of thousands of political killings as well as systematic torture during his rule, from 1982 to 1990. The trial is the first in the world in which the courts of one country prosecute the former ruler of another for alleged human rights crimes.

Habré is standing trial before the Extraordinary African Chambers in the Senegal court system. The chambers were inaugurated by Senegal and the African Union in February 2013 to prosecute the “person or persons” most responsible for international crimes committed in Chad between 1982 and 1990, the period when Habré ruled Chad. Judge Kam, of Burkina Faso, president of the Trial Chamber, will hear the case along with two senior Senegalese judges.

The trial is expected to last two months, with about 100 witnesses and victims expected to testify.

“If I get a chance to look Hissène Habré in the face, I will do it without fear,” said Fatimé Sakine, 53, a secretary who was subjected to electroshocks and beatings during 15 months in prison from 1984 to 1986 and who is in Dakar for the trial. “I want to know why we were kept rotting, why so many of my friends were tortured and killed.”

“This case is a milestone in the fight to hold the perpetrators of atrocities accountable for their crimes, in Africa and in the world,” Brody said. “It's taken many years, and many twists and turns, but in the end a group of tenacious survivors have shown that it was possible to bring their dictator to justice.” 

Posted: January 1, 1970, 12:00 am

(Dakar, July 17, 2015) – The trial of Chad’s former dictator Hissène Habré is a victory for the victims of his government. The trial began in Senegal on July 20, 2015, almost 25 years after he was overthrown.  

The trial of Chad’s former dictator Hissène Habré is a victory for the victims of his government. The trial will begin on July 20, 2015, almost 25 years after he was overthrown.

 
“The opening of Hissène Habré’s trial, 25 years after he fled Chad, is a tribute to the survivors of his brutal rule who never gave up fighting for justice,” said Reed Brody, counsel at Human Rights Watch who has worked with the victims since 1999. “This case warns despots everywhere that if they engage in atrocities they will never be out of the reach of their victims.”

Habré is charged with crimes against humanity, torture, and war crimes. The trial will be the first in the world in which the courts of one country prosecute the former ruler of another for alleged human rights crimes.

 
Habré will stand trial before the Extraordinary African Chambers in the Senegal court system. The chambers were inaugurated by Senegal and the African Union in February 2013 to prosecute the “person or persons” most responsible for international crimes committed in Chad between 1982 and 1990, the period when Habré ruled Chad. Judge Gberdao Gustave Kam of Burkina Faso, president of the Trial Chamber, will hear the case along with two senior Senegalese judges.

The trial is expected to last three months, with about 100 witnesses and victims expected to testify.

Habré, through his lawyers, has said that he does not want to appear in court. Under Senegalese law, however, the court president can require his appearance. 

“I have been waiting for this day since I walked out of prison almost 25 years ago, “ said Souleymane Guengueng, who nearly died of mistreatment and disease in Habré’s prisons, and later founded the Association of Victims of Crimes of the Regime of Hissène Habré (AVCRHH). “I want to look Hissène Habré in the face and ask him why I was kept rotting in jail for three years, why my friends were tortured and killed.”

Habré is accused of thousands of political killings and systematic torture. After he was deposed by the current president, Idriss Déby Itno, in 1990, Habré fled to Senegal. Habré was first arrested in Senegal in February 2000, but Senegal refused to prosecute him then or to extradite him to Belgium in 2005. It was only in 2012, when Macky Sall became president of Senegal and the International Court of Justice, acting on a suit by Belgium, ordered Senegal to prosecute or extradite Habré that progress was made toward the trial with the creation of the Extraordinary African Chambers. The chambers indicted Habré in July 2013 and placed him in pretrial custody. After a 19-month investigation, judges of the chambers found that there was sufficient evidence for Habré to face trial.

“This case is a milestone in the fight to hold the perpetrators of atrocities accountable for their crimes, in Africa and in the world,” Brody said. "It's taken many years, and many twists and turns, but in the end a group of tenacious survivors showed that even a dictator can be brought to justice." 

On March 25, a court in Chad convicted 20 top security agents of Habré’s government on torture and murder charges. 

Posted: January 1, 1970, 12:00 am

Erkin Musaev, year unknown © Association for Human Rights in Central Asia

Erkin Musaev was a former Uzbek government official and UN staffer who arrested and imprisoned in 2006 on politically-motivated charges of espionage, among others. 

(Bishkek) – Erkin Musaev, a United Nations employee and former government official, tortured and unjustly jailed for 11 years in Uzbekistan, was finally freed on August 11, 2017, according to his family, Human Rights Watch said today. Musaev had been imprisoned since 2006 and was granted early release on orders of President Shavkat Mirziyoyev, the family said.
 
Mirziyoyev should release all those imprisoned on politically motivated charges and ensure effective investigations into the torture of detainees, including Musaev, Human Rights Watch said.
 
“Erkin Musaev’s release is a joyous occasion for him and his family, but Musaev’s 11-year ordeal won’t end until those who tortured him are brought to justice,” said Steve Swerdlow, Central Asia researcher at Human Rights Watch. “President Mirziyoyev should see to it that all torture of detainees finally ends and all victims get a remedy.”
 
Musaev is the fifth political prisoner released since Mirziyoyev became acting president in September 2016, following the death of the long-time authoritarian leader Islam Karimov in August. During his campaign, Mirziyoyev promised increased accountability to citizens, and acknowledged the lack of reform in key aspects of Uzbekistan’s society, including the economy and the criminal justice system.
 
Since assuming office in December, Mirziyoyev has taken modest steps to loosen some restrictions on free expression, and openly criticized prosecutors for abuse of power in certain cases. He also announced plans to abolish exit visas, which improperly restrict the right of citizens to leave the country. But Mirziyoyev has taken few steps to free prisoners held on politically motivated charges.
 
Mirziyoyev should direct the relevant authorities to effectively investigate allegations that Musaev was tortured, and that his conviction and sentence were based on proceedings that violated basic fair trial standards, Human Rights Watch said. The Uzbek government should also immediately and unconditionally release the other peaceful activists and human rights defenders who remain in prison following politically motivated and unfair trials.
 
Musaev, now 50, was a UN employee and a former Uzbek government official in the Defense Ministry’s foreign trade department. He was involved in international cooperation programs with Western governments, including the US and the EU, for which authorities later accused him of espionage.
 
Musaev participated in a US government-sponsored exchange program in the mid-1990s, and in the late-1990s worked as a diplomat for the Uzbek government in Brussels. He later worked in Uzbekistan as a project manager for the UN Development Program’s “Border Management in Central Asia” project.
 
On January 31, 2006, border guards arrested Musaev at Tashkent airport, after allegedly uncovering a disk among his belongings containing “state secrets.” Musaev wrote to his father that officials had planted the evidence during the search. In its 2007 Human Rights report on Uzbekistan, the US State Department reported that Musaev was tortured in detention, which included severe beatings to his head, chest, and feet, and held for two months without access to a lawyer or any visitors.
 
A joint letter from the UN special rapporteur on torture and the head of the UN Working Group on Arbitrary Detention to then-President Karimov said that one beating by prison officials broke Musaev’s jaw. Authorities also coerced him to sign a confession that he had engaged in espionage for the US, the UK, and the UN.
 
Authorities initially charged Musaev with high treason and sharing government secrets. On June 13, 2006, a Tashkent military court sentenced him to 15 years in prison. The day after his conviction, he was also charged with abuse of power and neglect of duty, and another year was added to his sentence. In the ensuing years, Musaev’s relatives reported to journalists and US embassy officials that Uzbek authorities continued to periodically torture him, including one episode in which he was beaten so badly after refusing to provide false testimony that he was hospitalized as a result of significant blood loss. A court later tried and convicted him in another case in which he had been originally called as a witness, adding four years to his sentence.
 
In May 2008, the UN Working Group on Arbitrary Detention held that Musaev’s imprisonment was “arbitrary”, and in contravention of several international treaties to which Uzbekistan is a party. By February 2011, authorities had transferred Musaev to a high security prison in Navoi province and his body showed signs of burns and other wounds.
 
In June 2012, the UN Human Rights Committee issued its decision that the Uzbek government had tortured and otherwise ill-treated Musaev and violated his rights to liberty, security, and fair trial under the International Covenant on Civil and Political Rights (articles 7, 9 and 14 respectively). The committee called on Uzbekistan to provide him with an effective remedy for the violations. But Uzbek authorities ignored the ruling, and Musaev remained in prison.
 
“Musaev suffered harrowing torture at the hands of Uzbek authorities, and his story is just one of thousands of victims of arbitrary imprisonment and ill-treatment,” Swerdlow said. “Uzbekistan’s international partners, including the US and the EU, should use every means of influence at their disposal to reiterate their calls to President Mirziyoyev to release everyone being held unlawfully and arbitrarily under international standards.”
 
Posted: January 1, 1970, 12:00 am

Related Content

 

August 2, 2017

The Honorable James Mattis
Secretary of Defense
Department of Defense
1000 Defense Pentagon
Washington, D.C. 22202

The Honorable Mike Pompeo
Director, Central Intelligence Agency
Office of the Director
Washington, D.C. 20505

The Honorable Andrew McCabe
Acting Director
Federal Bureau of Investigation
FBI Headquarters
935 Pennsylvania Avenue, NW
Washington, DC 20535-0001

VIA EMAIL AND REGULAR MAIL

Re: US Cooperation with Abusive Allied Forces in Yemen

Dear Secretary Mattis, Director Pompeo, and Acting Director McCabe:

We, the undersigned human rights, civil liberties, and religious organizations, write to urge you to make public to the fullest extent possible without disclosing sources and methods, any reviews conducted by your agencies into allegations that US-allied forces of the United Arab Emirates (UAE) and UAE-backed Yemeni forces have been responsible for serious abuses in Yemen.[1] These include arbitrary detentions, torture, mistreatment, enforced disappearances, and unlawful prisoner transfers.[2] We also ask that your agencies publicly disclose any actions the United States has taken with respect to any UAE or Yemeni forces implicated in serious abuses. For the Defense Department, this would include, but not be limited to, actions with respect to enforcement of the Leahy law.

We understand that Secretary Mattis has responded in classified form to a letter sent by the Chair and Ranking members of the Senate Armed Services Committee that requested the Secretary to direct an immediate review of the facts and circumstances surrounding these allegations.[3] Disclosing the material contents of this response – including whether the Defense Department has initiated or completed such a review – would help assure the public that the United States is appropriately responding to the allegations.

We are unaware of any similar review being conducted by the Central Intelligence Agency (CIA), the Federal Bureau of Investigation, or other US government agencies. It is important that these agencies, and possibly others, conduct reviews as well given that the U.S. military denied involvement in some alleged interrogations in which detainees said U.S. personnel were involved. In particular, the Associated Press (AP) reported that some prisoners were transferred to a ship where US “polygraph experts” and “psychological experts” conducted interrogations. A CIA spokesman provided no comment on the specific claims. The allegations of abuse also involve the possible unlawful transfer of prisoners by US allied forces, which the CIA has been involved with in the past, including with the UAE.[4]

The AP report included statements by U.S. Defense Department officials saying that the United States conducts interrogations in detention facilities in Yemen, provides questions to the Emirati forces holding detainees, and receives transcripts of their interrogations in response. The AP article and a subsequent one also alleged that the United States provides information to the UAE on suspected militants that the United States believes should be apprehended or questioned.[5] A Yemeni brigadier general told the AP that the United States provided “coalition authorities” a list of most-wanted men, many of whom were later arrested.[6]

We are concerned by comments from several U.S. defense officials and military leaders that they had looked into allegations of abuse by UAE and Yemeni forces but were confident no abuses had taken place “when US forces [were] present.”[7] Under the Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, to which the United States is a party, authorities receiving intelligence information that may have been obtained by torture or ill-treatment have a responsibility to make genuine inquiries with the sending country to determine whether torture was used to obtain it, and whether any actions were taken to appropriately punish those responsible. Willfully making use of information obtained through coercive means may amount to complicity in torture or ill-treatment.[8]

The United States should also inquire into and report on credible allegations from family members of detainees and Yemeni government officials that some prisoners had been transferred from UAE or Yemeni custody to a UAE-run military base in Eritrea without a fair means to contest the transfer.

The United States doubtless recognizes that continued cooperation with forces engaged in serious abuses places U.S. personnel at risk of being complicit in violations of international human rights and humanitarian law. We hope this brings a sense of urgency to U.S. investigations into the alleged abuses and the prompt implementation of necessary corrective action. The aim should be the elimination of arbitrary detention, torture and ill-treatment, and enforced disappearances, among other abuses. Until the risk of such abuses is substantially reduced, the United States should not receive information from such forces unless it can be demonstrated that the information was not obtained through torture or ill treatment.[9]

The US should also press the UAE and other forces implicated to make publicly available a list of all detention sites and provide information on all those in custody or who died in detention. These forces should fully cooperate with the committee established by Yemeni President Abdu Rabbu Mansour Hadi on June 22, 2017 to investigate the abuses. The committee should be able to operate independently with access to all detention facilities, and exchange information with nongovernmental organizations.[10]

We appreciate the Defense Department’s prompt response to the letter from the Senate Armed Services Committee. However, we strongly believe the public needs more information to assess the U.S. government’s response to this urgent issue, which has implications for US military operations beyond the situation in Yemen.

We look forward to your response.

Sincerely,

American Civil Liberties Union
Center for Victims of Torture
Human Rights First
Human Rights Watch
National Religious Campaign Against Torture
Physicians for Human Rights
The Constitution Project
Win Without War

cc: Secretary of State Rex Tillerson, Attorney General Jeff Sessions, Chair and Ranking Members of the Senate Armed Services Committee, House Armed Services Committee, Senate Select Committee on Intelligence, House Permanent Select Committee on Intelligence, Senate Judiciary Committee, House Judiciary Committee, and National Security Adviser H.R. McMaster.

 

[1] Maggie Michael, “In Yemen’s secret prisons, UAE tortures and US interrogates,” Associated Press, June 22, 2017, https://www.apnews.com/4925f7f0fa654853bd6f2f57174179fe/In-Yemen%27s-secret-prisons,-UAE-tortures-and-US-interrogates; see also Maggie Michael, “Inside Yemen’s secret prisons: ‘We could hear the screams,’” Associated Press, June 23, 2017, https://apnews.com/b2a5ecfd1adb442a86df5bd05bc6599e/%22You-can-hear-the-screams%22:-Inside-Yemen's-secret-prisons.

[2] See “Yemen: UAE Backs Abusive Local Forces,” Human Rights Watch news release, June 22, 2017, https://www.hrw.org/news/2017/06/22/yemen-uae-backs-abusive-local-forces; see also, “Final Report of the Panel of Experts on Yemen,” January 11, 2017, http://www.un.org/ga/search/view_doc.asp?symbol=S/2017/81, pp. 132-134; see also “We Lived Days in Hell: Civilian Perspectives on the Conflict in Yemen,” Center for Civilians in Conflict, 2016, http://civiliansinconflict.org/uploads/files/pressers/CIVIC_Report_Yemen_2016.pdf, pp. 20-22, 31, 38-39.

[3] Letter from Senators John McCain and Jack Reed, Chair and Ranking Members of the Senate Armed Services Committee to Secretary of Defense James Mattis, June 22, 2017, https://www.documentcloud.org/documents/3873444-2017-06-22-McCain-Reed-Letter-to-SECDEF-Re-UAE.html.

[4] “The Rendition Project, Sanad al-Kazemi,” https://www.therenditionproject.org.uk/prisoners/kazimi.html; “Who are the Guantanamo Detainees,” Case Sheet 25, Amnesty International, May 1, 2008, https://www.therenditionproject.org.uk/documents/RDI/080501-Amnesty-Kazimi-Case-Sheet.pdf.

[5] Desmond Butler and Maggie Michael, “Senators ask military to clarify US role in Yemen torture,” Associated Press, June 25, 2017, https://apnews.com/5c645174e6614eb499a4151af23bf864.

[6] Maggie Michael, “In Yemen’s secret prisons, UAE tortures and US interrogates,” Associated Press, June 22, 2017; https://www.apnews.com/4925f7f0fa654853bd6f2f57174179fe/In-Yemen%27s-secret-prisons,-UAE-tortures-and-US-interrogates.

[7] Laura Pitter, “US Ignores Allies’ Torture in Yemen: Evidence of US Complicity in Abuses by UAE and Yemeni Forces,” Human Rights Watch, June 22, 2017, https://www.hrw.org/news/2017/06/22/us-ignores-allies-torture-yemen.

[8] Martin Scheinin, Report of the Special Rapporteur on the promotion and protection of human rights and fundamental freedoms while countering terrorism, A/HRC/10/3, February 4, 2009, http://www2.ohchr.org/english/issues/terrorism/rapporteur/docs/A.HRC.10.3.pdf, para. 55; Joint Committee on Human Rights, “Allegations of UK Complicity in Torture,” Twenty-third report of Session 2008-09, August 4, 2009, http://www.publications.parliament.uk/pa/jt200809/jtselect/jtrights/152/15202.htm, para. 42.

[9] Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment, adopted December 10, 1984, G.A. Res. 39/46, annex, 39 U.N. GAOR Supp. (No. 51) at 197, U.N. Doc. A/39/51 (1984), entered into force June 26, 1987, art. 15, http://www.ohchr.org/EN/ProfessionalInterest/Pages/CAT.aspx (accessed November 12, 2015).

[10] Kristine Beckerle, “US, Gulf Allies, Must Open to Their Own Role in Yemen’s Human Rights Abuses,” The Progressive, June 29, 2017, https://www.hrw.org/news/2017/06/29/us-gulf-allies-must-own-their-role-y....

Posted: January 1, 1970, 12:00 am
 
UPDATE: On August 4, the European Court of Human Rights issued a preliminary injunction ordering Russia not to deport Khodoberdi Nurmatov to Uzbekistan, until the court can review his case.
 

Ali Feruz at Basmanny district court in Moscow waiting for his hearing in the evening of August 1, 2017.

© 2017 Elena Kostyuchenko
(Moscow) – An Uzbek journalist and asylum-seeker faces a risk of ill-treatment, including torture, if Russia returns him to Uzbekistan, Human Rights Watch said today.
 
Khodoberdi Nurmatov, whose expulsion Moscow’s Basmanny district court ordered on August 1, 2017, is a journalist known as Ali Feruz with one of Russia’s leading independent investigative newspapers, Novaya Gazeta. He covers such issues as hate crimes, migrant workers’ rights, and discrimination against lesbian, gay, bisexual and transgender (LGBT) people.
 
“Russia has an obligation to protect Nurmatov, not send him directly into harm’s way,” said Rachel Denber, deputy Europe and Central Asia director at Human Rights Watch. “Uzbekistan has a long and well-established record of torture, and there is little doubt that Nurmatov faces a serious risk if he’s forcibly returned there.”
 
A journalist with Novaya Gazeta who works closely with Nurmatov told Human Rights Watch that Nurmatov fled Uzbekistan in 2008, after Uzbekistan’s security services detained him.
 
The court ruled that Nurmatov had violated Russia’s migration rules and sanctioned his expulsion. Russian authorities should uphold its human rights obligations and ensure that Nurmatov is not expelled or otherwise forcibly returned to Uzbekistan, where he risks serious ill treatment, Human Rights Watch said.
 
Police took Nurmatov into custody directly after the court hearing and transferred him to a temporary holding center for foreign nationals, operated by the Interior Ministry in Sakharovo, a Moscow suburb. Nurmatov will promptly appeal the decision to the Moscow city court. His lawyers will also seek an emergency order from the European Court of Human Rights instructing Russia to suspend the expulsion.
 
Nurmatov’s Novaya Gazeta colleague said that Uzbekistan’s National Security Service (SNB) detained, interrogated, and severely beat Nurmatov in September 2008 in an attempt to coerce him to become an informant on acquaintances and friends who were religious Muslims. After the SNB released Nurmatov, he fled to Kyrgyzstan, where he considered seeking refugee status but feared for his safety due to the risks of forced return and kidnappings that Uzbek asylum seekers faced there.
 
In 2009, he traveled from Kyrgyzstan to Kazakhstan, where he contacted UNHCR, the UN refugee agency, about refugee status. He fled Kazakhstan in 2011 after Kazakh authorities forcibly returned to Uzbekistan at least 28 religious Muslims who had fled religious persecution in Uzbekistan. In 2011 he moved to Russia, where his mother and two siblings, all Russian citizens, live.
 

Activist outside Moscow’s Basmanny District court on August 1, 2017 holds a poster declaring “Say no to persecution of journalists! We demand asylum for Ali Feruz.”

© Cornelius Runtsch for Human Rights Watch, Moscow, 2017
In March 2016, Russia’s Federal Migration Service denied Nurmatov’s request for asylum, and in November Russian authorities rejected his request for temporary protection. The authorities rejected his application twice, and both times higher authorities overturned the rejection and returned the case for additional review. His current application is under review. Svetlana Gannushkina, a leading expert on migration issues in Russia, told Human Rights Watch that the “court ruling on Ali’s expulsion from Russia was simply lawless because by Russian law, he has the right to remain in Russia while his request [for temporary protection] is under review.”
 
In 2012 Nurmatov lost his Uzbek passport and other identification documents, and reported the loss to police. Novaya Gazeta said he did not seek to replace his passport, fearing threats to his security if he approached the Uzbek embassy.
 
In March 2017, police in Moscow detained Nurmatov and questioned him about his journalism work and his temporary protection application. They released him 12 hours later.
 
Uzbek authorities have imprisoned thousands of people on politically motivated charges, most of them religious believers, who, like Nurmatov’s friends on whom the SNB wanted Nurmatov to inform, practice forms of Islam that authorities brand “extremist.” They have also imprisoned rights and opposition activists, journalists, and other perceived critics. Authorities frequently torture detainees and arbitrarily extend their sentences.
 
In its last review of Uzbekistan, in 2013, the UN Committee against Torture found that torture in Uzbekistan was “‘systematic,’ ‘unpunished,’ and ‘encouraged’ by law enforcement and security officers.”
 
Uzbekistan’s new president, Shavkat Mirziyoyev, has promised reforms, but such endemic problems as torture and politically motivated detention have yet to be addressed, Human Rights Watch said.
 
Russia’s obligations as a party to the Convention against Torture and the European Convention on Human Rights include ensuring that no one in Russian custody is forcibly sent to a place where they face a real risk of persecution, torture, or other serious human rights violations. The European Court of Human Rights has issued numerous rulings, including on cases emanating from Russia, forbidding forced returns to Uzbekistan because of the risk of torture anyone returned would face there.
 
“It’s difficult to imagine what more information Russian authorities need to be persuaded of the dire risk of abuse Nurmatov faces in Uzbekistan,” Denber said. “Now they need to do what’s right, and what the law prescribes – to free Nurmatov, protect him, and not return him to Uzbekistan.”
Posted: January 1, 1970, 12:00 am

A poster by intersex activist Pidgeon Pagonis

© 2017 Human Rights Watch

For decades, parents of intersex babies – children whose sex characteristics aren’t quite typical male or typical female – have been pressured into consenting to medically unnecessary and irreversible surgery to make their children appear ‘normal.’ But these surgeries leave physical, emotional, and psychological scars, Human Rights Watch says in a new report. Philippa Stewart speaks to Kimberly Zieselman, the executive director of intersex advocacy group interACT, about this damaging surgery and what needs to be done to protect intersex children.

What are some of the misconceptions around being born intersex?

Unfortunately, in our society we’re still at a point where most people don’t know the basic facts about being intersex. People think it is very rare, but really, up to two percent of the population are born with intersex traits. And there are well over 30 to 40 intersex variations, which is something a lot of people don’t realize.

What do people who are intersex deal with because of this lack of understanding?

People are told not to discuss being intersex. That makes intersex children feel almost freakish, and this feeling is carried into adulthood.

Even with the best interests of the child in mind, parents and doctors will often relay the message to children that they are wrong and different and something to be fixed. Often that fix includes irreversible medical intervention really early in life, including surgery. This attitude creates a feeling of stigma and shame and affects people deeply. We see physical harm from the surgery, but also psychological harm because of the intervention. The fact that you’re told by society that you don’t belong and that you’re a mistake or your body is a mistake – most intersex people really struggle with this their whole lives.

What is your group calling for?

What we want is a moratorium on surgery if the person is too young to understand and to consent.

So, we want doctors to shift their attention away from “fixing” babies and young children and instead focus on adolescents, young adults, and adults who may have decided for themselves they want surgery – that is where the help is needed. We just want the focus to be shifted to consenting adults.

What do some doctors tell parents when they are trying to make these decisions?

One thing I’ll never forget is a parent who told me that, when they were asking questions and were confused about why the surgery had to happen right away, the doctor got frustrated and said, “Well if you don’t do this surgery, frankly it’s akin to child abuse.” That’s probably the worst thing I’ve heard. More often, it is a tone or an attitude that the doctors send out in the way they talk to parents – that suggests the same thing.

There’s an established power dynamic between doctors and patients. In these situations, with your children involved, you go in to a bit of a panic mode and you are relying on this doctor to tell you how to help your child.

What needs to change in this process to help parents?

Doctors need to frame it in a different way, so parents know there is no urgency. Parents should also be given the full spectrum of choices, including waiting for a period of time, talking to other parents who have gone through this with their children, or connecting with adults who have the same intersex traits as the baby. Then, they can gather information for themselves to help them help their child make a decision.

Doctors in the United States continue to perform medically unnecessary surgeries that can inflict permanent harm on intersex children. 

What’s happening in too many cases is that doctors are telling parents, “Well it is really better to do this kind of surgery when they are young because they won’t remember it, there will be less trauma, and they won’t have any time that they’ll remember when their body looked different so they won’t be made fun of or discriminated against by their peers.” These aren’t medical reasons, they are all sociological, they start creating a “social emergency” and it scares the parents. These fears also aren’t grounded in any kind of data – they’re just hypotheses.

But it isn’t a medical emergency or a social emergency. It is just a child with a different type of body.

Also, parents should know that some of these surgeries are deemed akin to torture by United Nations rights experts when done without informed consent.

This all must have an impact on how intersex people view doctors.

Absolutely. For those who have had surgery and maybe now need doctors for hormone replacement therapy – which you need for the rest of your life after having had healthy gonads removed – there is a reliance on the medical community. You need to access doctors to stay healthy, but for lots of intersex people that is very difficult.

A lot of intersex people who have been lied to as children and had surgeries done to them without their consent develop a mistrust of doctors. I’ve heard intersex people say they are avoiding the doctor because they just can’t cope with the stress of it.

The intersex community is not saying doctors are bad. What we need are doctors we can fully trust and who will explain things so we can understand and consent to procedures.

We need the doctors who don’t do this to tell the rest of their profession that these surgeries shouldn’t be done.

We shouldn’t be taking away a child’s bodily autonomy just because they don’t fit into our idea of normal.

Do intersex adults sometimes not know what surgery they underwent as children?

In the past decade that has been less common.

That said, there’s so many of us walking around who were lied to, or were not told for a really long time, or found out accidentally. This was the case of many of us in my generation. My story is that I didn’t find out until nine years ago, when I was 41. I knew I’d had surgery. I signed a form when I was 15, along with my dad, but we didn’t know what it was for. We thought it was a hysterectomy and cancerous ovaries being removed. That is a pretty common story for people around my age and a little bit younger – that intersex people get their medical records and realize they were lied to, often by their parents as well as the medical community.

What have people told you about the effects of these surgeries?

It does sound dramatic, but it is quite common, especially for people who have had medical intervention, to experience PTSD as a result.

There are also more subtle things like having a pattern of disassociation in your life, difficulties in relationships, particularly with sexual intimacy and trust. There is also the physical scarring and nerve damage that leads to loss of sensation.

This story has just stuck with me. It was a young person who is now in her 20s. When she was 18 months old, her parents took her to the doctor and it was determined her vagina was too small. The recommendation was a surgery to create a vagina.

A father plays with his daughter, who was born with atypical sex characteristics. Despite pressure from doctors, the parents chose not to elect medically unnecessary surgeries on their child. 

© 2017 Human Rights Watch

The parents took the surgeon’s advice but then were surprised to learn only after the surgery was completed that they would be required to dilate their child’s vagina regularly afterward. What happened was that the parents would dilate the child, with all good intentions, but they would physically hold her down. You can just imagine the trauma from that. One of the results was this child became anorexic – it was about gaining control over her body.

Happily, recently she’s been doing great and is starting to move past the trauma and speak out about it as an advocate, and her mom has been very supportive.

There’s a lot to say about parents accepting and being comfortable with their child’s non-binary body.

What do you think is the key to acceptance for intersex people?

The LGBT community was the first to embrace intersex issues, and it is opening a lot of doors for us, but this is truly a broader issue. We’d like people to understand that really at its core this is a children’s rights issue. It is also about health and reproductive rights, because these operations can lead to infertility.

We’re doing so much to connect and empower intersex people in their teens and 20s. Even though intersex isn’t a sexual orientation or a gender identity, we have many similarities – like discrimination based on sex and bodies – with the LGBT movement, and that movement has really paved the way for acceptance. There’s a long way to go, but it really has made a difference to young people and how accepting they are. It gives me a lot of hope.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Doctors in the United States continue to perform medically unnecessary surgeries that can inflict permanent harm on intersex children. 

(Chicago, July 25, 2017) – Doctors in the United States continue to perform medically unnecessary surgeries that can inflict permanent harm on intersex children, Human Rights Watch and interACT said in a report released today. Despite decades of controversy over the procedures, doctors operate on children’s gonads, internal sex organs, and genitals when they are too young to participate in the decision, even though the surgeries could be safely deferred.

The 160-page report, “‘I Want to Be Like Nature Made Me’: Medically Unnecessary Surgeries on Intersex Children in the US,” examines the physical and psychological damage caused by medically unnecessary surgery on intersex people, who are born with chromosomes, gonads, sex organs, or genitalia that differ from those seen as socially typical for boys and girls. The report examines the controversy over the operations inside the medical community, and the pressure on parents to opt for surgery.

Once called “hermaphrodites” (a term now considered pejorative and outdated), intersex people are not rare, but they are widely misunderstood. Based on a medical theory popularized in the 1960s, doctors perform surgery on intersex children – often in infancy – with the stated aim of making it easier for them to grow up “normal.” The results are often catastrophic, the supposed benefits are largely unproven, and there are rarely urgent health considerations requiring immediate, irreversible intervention.

“The devastation caused by medically unnecessary surgery on intersex infants is both physical and psychological,” said Kimberly Zieselman, an intersex woman and executive director of interACT. “Despite decades of patient advocates putting the medical community on notice about the harm from these procedures, many doctors continue to present these surgeries to parents as good options.” 

As many as 1.7 percent of babies are different from what is typically called a boy or a girl. The chromosomes, gonads, internal, or external sex organs of these children differ from social expectations. Some intersex traits – such as atypical external genitalia – are apparent at birth. Others – such as gonads or chromosomes that do not match the expectations of the assigned sex – may manifest later in life, in some cases around puberty. A child can be raised as either sex without surgery. On the other hand, genital or gonadal surgeries on intersex children too young to declare their gender identity carry the risk of surgically assigning the wrong sex.

Surgery to remove gonads can amount to sterilization without the patient’s consent, and then require lifelong hormone replacement therapy. Operations to alter the size or appearance of children’s genitals risk incontinence, scarring, lack of sensation, and psychological trauma. The procedures are irreversible, nerves that are severed cannot regrow, and scar tissue can limit options for future surgery.

Medical protocols have evolved – in particular with an increasingly common use of multi-disciplinary teams that work on cases of “Differences of Sex Development.” Most medical practitioners now acknowledge that parents may prefer to leave their child’s body intact. A doctor who works on such a team told Human Rights Watch: “We’re listening to the adult patients who are telling us that they feel they were mistreated and mutilated and that’s a very powerful thing.”

However, the field remains fraught with uneven, inadequate, and piecemeal standards of care – and broad disagreements among practitioners over how best to respect and protect the rights of their intersex patients. While certain surgical interventions on intersex children are undisputedly medically necessary, some surgeons in the US perform risky and medically unnecessary cosmetic surgeries on intersex children, often before they are even able to talk.

“The medical community has made progress in intersex care in recent decades, but medically unnecessary irreversible surgeries on children and infants remain common,” said Kyle Knight, researcher at Human Rights Watch and author of the report. “The pressure to fit in and live a ‘normal’ life is real, but there is no evidence that surgery delivers on the promise of making that easier, and ample evidence that it risks causing irreversible lifelong harm.”

United Nations human rights bodies have increasingly condemned countries around the world in recent years for failing to ban medically unnecessary surgery on intersex children. In a 2013 report, the United Nations special rapporteur on torture noted that, “Children who are born with atypical sex characteristics are often subject to irreversible sex assignment, involuntary sterilization, involuntary genital normalizing surgery … leaving them with permanent, irreversible infertility and causing severe mental suffering.”

In July 2017, three former US surgeons general wrote that they believed “there is insufficient evidence that growing up with atypical genitalia leads to psychosocial distress,” and “while there is little evidence that cosmetic infant genitoplasty is necessary to reduce psychological damage, evidence does show that the surgery itself can cause severe and irreversible physical harm and emotional distress.”

Interview: Intersex Babies Don’t Need ‘Fixing’

Interview: Intersex Babies Don’t Need ‘Fixing’

For decades, parents of intersex babies have been pressured into consenting to medically unnecessary and irreversible surgery to make their children appear ‘normal.’ 

The report is based on in-depth interviews conducted by Human Rights Watch researcher Kyle Knight and Dr. Suegee Tamar-Mattis, a physician and Human Rights Watch research consultant, with 30 intersex adults, 2 intersex children, 17 parents of intersex children, and 21 healthcare practitioners including gynecologists, endocrinologists, urologists, psychologists, and other mental health providers who work with intersex people. The report also contains an extensive literature review, and features the available data on surgeries.

Several doctors told Human Rights Watch that while they were increasingly uncomfortable advising parents to choose these surgeries, the operations are still taking place in their clinics. Parents said they still feel pressure from doctors to elect these surgeries.

“The pediatricians are in a position of power. And if it’s an issue of parents being scared, that is the problem that has to get solved. It’s not really a matter of if you do surgery – that doesn’t make any sense, that’s not solving anything,” an endocrinologist and medical professor told Human Rights Watch. “When we’re trying to force people into cultural normative, hetero-normative situations, there’s a high chance that we’re going to make some major mistakes and harm people irreparably,” said a gynecologist on a team for “differences in sex development.”

Parents of an 8-year-old born with atypical genitals said: “The doctors told us it was important to have the surgery right away because it would be traumatic for our child to grow up looking different. What’s more traumatic? This sort of operation or growing up a little different?”

These and other parents told Human Rights Watch that the most helpful resource in raising their intersex children was meeting other parents and intersex adults through support groups.

The experience of those who have undergone the surgery, along with principles of medical ethics, suggest that unless and until there is outcome data establishing that the medical benefits of specific surgical procedures on infants and young children outweigh the potential harm, they should not be used, interACT and Human Rights Watch said. At present and despite several decades’ worth of surgeries, that evidence simply doesn’t exist.

The US government and medical bodies should put an end to all surgical procedures that seek to alter the gonads, genitals, or internal sex organs of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred, Human Rights Watch and interACT said.

“Parents of intersex children are often scared and confused about how best to protect their children from stigma,” Zieselman said. “It’s such a relief for them when they meet others who have the same intersex traits as their children and see that they have grown up healthy and happy.”

Posted: January 1, 1970, 12:00 am

Popular Mobilization Force members on the frontline with the Islamic State in al-Fatha, northeast of Baiji, Iraq on October 18, 2015.

© 2015 Reuters

(Baghdad) – As the grim scene played out on my computer screen in Baghdad on July 12, my stomach sank.

I was watching a video clip of men in Iraqi army uniforms throwing a detainee off a cliff onto the banks of a river and opening fire on him. As he fell and landed next to another motionless body, I couldn’t help but think that this footage could breathe new life into the self-proclaimed Islamic State or ISIS or whatever ISIS 2.0 will be called now that its Iraqi “capital” has fallen. Such unchecked abuse, I thought, as Baghdad celebrated the liberation of Mosul on the streets below, would likely drive more enraged men into the hands of these extremists.

I first came across the clip, one of many depicting Iraqi forces committing abuses such as torture and execution, the day before on Facebook. It stood out because it featured a particularly disturbing form of execution and took place in a location that was far too familiar to me.

Within five minutes of its release, my colleague at Human Rights Watch who specializes in satellite imagery analysis, had identified the exact building and cliff in west Mosul where this video was filmed. What he saw in the images, which were spaced out over several days leading up to the date the video was circulated online, was Iraqi army vehicles present around the place from which the man in the footage had been thrown. This strongly suggests that the video is real and recent. The government has yet to properly comment.

Satellite imagery from July 12 showing the building and Tigris riverbank seen in a video posted of soldiers throwing a detainee off a cliff in west Mosul as well as military vehicles in the vicinity. 

© 2017 DigitalGlobe

If it is authentic, it wouldn’t be the first video of its kind to be released. Other videos of the Emergency Response Division of the Iraqi Ministry of Interior surfaced a few months ago and up until that point were perhaps the most disturbing abuse videos to come out of the battle to reclaim the fallen Iraqi city. But seeing this July 11 video emerge just after the prime minister declared victory over ISIS in Mosul, made me feel especially pessimistic about the future of Iraq and the potential defeat of ISIS. It was as if in the final phase of their campaign, Iraqi and United States-led coalition forces, who had launched the offensive months earlier, were saying, “Let’s get this over with as quickly as possible,” and disregarding respect for and commitment to the laws of war. Such a pervasive attitude will surely not go unnoticed and will likely backfire to embolden the future version of ISIS by drawing in more recruits.

In fact, despite celebrations in Iraq and media reports to the contrary, the recent defeat of ISIS in Mosul does not mean the end of ISIS. It means the end of an ISIS that controls territory. This is a blow to the so-called caliphate, but it’s also the beginning of a new phase, one that could be just as, if not more, frightening.

In the last few months as it’s lost ground in Mosul and its “capital” of Raqqa in Syria, ISIS has also been morphing quickly back into a traditional insurgent group, carrying out bombings in Iraq and Syria. A key part of why it will continue to attract recruits is exactly because of videos like the one I saw earlier this month. Such footage, which seemingly hypocritically showcases Iraqi soldiers using this battle to not only continue to abuse the civilian population, but also stoop to ISIS’ level when doing so, only further inflames the tensions ISIS thrives in.

While the first months of the Mosul offensive were relatively clean, this horrible video marked yet another instance of the government’s cruelty. Evidence of abuse by Iraqi troops from Mosul and from previous operations against ISIS in Iraq have, as I mentioned earlier, been seen before. Human Rights Watch has documented summary executions of suspected ISIS fighters, detention in inhumane conditions and collective punishment against family members of ISIS fighters, including home demolitions and forced deportations to “rehabilitation camps” at the hands of Iraq’s government. We have also documented the arbitrary detention of over 1,000 Sunnis displaced from the fighting around Mosul. But even this striking footage on the heels of Mosul’s liberation was an unfortunate wake-up call at a critical time for the country.

Worse, this video serves as a reminder of exploitation by the Iraqi government in years prior to ISIS. Since 2003, Iraqi forces and mostly Shia non-state and government armed groups have carried out abuses against the civilian population with complete impunity, mainly targeting Sunni Arabs. They have executed campaigns of arbitrary detention, enforced disappearance, torture, extrajudicial killings and forcible displacement. These experiences no doubt pushed young Sunni Arab men to join extremist groups in Iraq in the past. Families of those who have joined ISIS have told me this, and there’s no reason why the government’s ramped up abuse now will not continue to serve as a recruitment tool as ISIS seeks to reassert itself after its loss in Mosul.

Every Iraqi and coalition representative I’ve spoken with agrees that the battle against ISIS is not simply a military one, but also a political one to stem the push factors that most likely have encouraged young Sunni Arab men to turn to extremist groups. Part of this fight, perhaps more challenging than the military one, is to end the reign of impunity, and for Baghdad authorities to show the Iraqi public that they are investigating and holding their own forces and commanders accountable even while fighting back against ISIS.

But so far Human Rights Watch has not seen a single example of such accountability since 2014, including after grotesque videos of Iraqi officers from the Interior Ministry’s elite Emergency Response Division torturing and executing alleged ISIS affiliates and their family members were published in May. We heard from an adviser to Iraqi Prime Minister Haider al-Abadi on July 14 that the government would announce action against the officers involved, but not for some time, because it would “interfere with the current congratulatory victory messages.”

This suggests to me that Abadi does not fully appreciate how damaging these abuses continue to be. The battle for Mosul is meant to be the final battle in Iraq against ISIS, yet it has opened the floodgates to the very abuses that Baghdad has met with silence for years. Right now, Abadi should represent not only his constituency who desire a military blow to ISIS, but also the more than 1 million civilians who have lived under ISIS control for the past three years. He should demonstrate as quickly as possible that he also has their interests at heart, is taking steps to end the abuses that have marginalized them, and reintegrate them into an Iraq that aims to reconcile communities and rejects calls for retribution.

Abadi’s window is closing fast. Videos like the one on July 11 have eaten away at the feelings of optimism I had for where things are heading in Iraq ― not only in Mosul. It demonstrated that the country, even at the highest levels of government, is determined to sow more seeds of resentment rather than address grievances.

If Baghdad doesn’t act now, we will not only fail to see an end to extremist groups in Iraq anytime soon, but we will also see the cycle of marginalization continue and an ISIS 2.0 unleash itself on the world.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Summary

The mayor said, “All thieves must be killed.” He said it was an order.

−Witness to the execution of Fulgence Rukundo on December 6, 2016

Rwandan security forces summarily executed at least 37 suspected petty offenders in Rwanda’s Western Province between July 2016 and March 2017. Soldiers arbitrarily arrested and shot most of the victims, in what appears to be an officially sanctioned strategy to execute suspected thieves, smugglers, and other petty offenders, instead of prosecuting them. These killings, carried out by and with the backing of state agents, are a blatant violation of both Rwandan law and international human rights law.

Human Rights Watch also documented four enforced disappearances of suspected petty offenders between April and December 2016. The victims’ families believe the security forces killed their loved ones, but their bodies have not been found. In two other incidents documented by Human Rights Watch, in August 2016 and April 2017, authorities encouraged local residents to kill suspected thieves, and they did in fact beat the victims to death.

This report documents serious violations committed by the security forces in Rubavu and Rutsiro districts in Rwanda’s Western Province, including extrajudicial executions, enforced disappearances, and threats against family members and other witnesses to the violations. The report is based on 119 interviews conducted between January and July 2017 with 119 family members, witnesses, government officials, and others knowledgeable about the arrests and executions. Human Rights Watch has received credible reports of at least six other extrajudicial executions that it is continuing to verify, including some cases allegedly committed as recently as June 2017, and some cases in Rusizi district (Western Province) and Musanze district (Northern Province).

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Most victims were accused of stealing items such as bananas, a cow, or a motorcycle. Others were suspected of smuggling marijuana, illegally crossing the border from the Democratic Republic of Congo into Rwanda, or of using illegal fishing nets. No effort was made to establish their guilt or bring them to justice. Instead of investigating the killings and enforced disappearances and providing information or assistance to the families, local authorities, including law enforcement officials, threatened some who dared to
ask questions.

Some victims were first arrested by civilian authorities who then took them to nearby military stations. Soldiers then executed the victims at or near the military base, sometimes after ill-treating them in detention. Witnesses who saw the bodies soon after the executions said they saw bullet wounds and injuries that seemed to have been caused by beatings or stabbings. One victim had been stabbed in the heart; another had a cord around his neck.

A man suspected of stealing a cow was arrested by local military and civilian officials and detained for a night in the local government office, where soldiers arrived and beat him and stabbed him in the leg with a knife. The next day, soldiers shot him dead. Soldiers forced another man to carry the remains of the cow he was accused of stealing on his back for more than five kilometers, with the cow’s head on his head. After presenting the victim to local residents, local officials, and the military during a public community meeting, soldiers then walked him to a nearby field and shot him dead. Another man was beaten to death for not turning up for community work he was required to perform.

Members of the military or the police killed at least 11 men on Lake Kivu in Rubavu and Rutsiro districts for using illegal nets known as kaningini while night fishing. There were survivors who described how they had jumped out of their fishing canoes and swam away from the approaching military or police boats. Those left behind in the canoes were shot dead by the officers.

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In some cases, other security forces such as the Inkeragutabara, an auxiliary force of the Rwandan army, and the District Administration Security Support Organ (DASSO), a local defense force that supports the police, were involved in the executions.

These killings were not isolated events, but appear to be part of an official strategy. In most of the cases documented by Human Rights Watch, local military and civilian authorities told residents after the execution, often during public meetings, that they were following “new orders” or a “new law” stating that all thieves and other criminals in the region would be arrested and executed. In several cases authorities cited the identity of a recent victim and justified his or her killing based on the fact that he or she was a suspected criminal.

These killings, some of which occurred in front of multiple witnesses, are rarely discussed in Rwanda. Given the strict restrictions on independent media and civil society in Rwanda, no local media outlets have reported about the killings documented in this report, and local human rights groups are too afraid to publish any information on such issues.

In December 2016, a coalition of opposition political parties published a press release on several cases of extrajudicial killings in northwestern Rwanda, including some of the cases documented by Human Rights Watch. Soon after publication, the police in Kigali summoned opposition leader Boniface Twagirimana for interrogation on January 12, 18, and 19, 2017, and accused him of spreading unfounded rumors. He was not charged with any offense.

On July 5, 2017, Human Rights Watch wrote to Johnston Busingye, minister of justice, with copies delivered to the ministers of defense, local government and the head of the police, asking for further information on cases outlined in this report and requesting a meeting. The letter is reproduced in Appendix IV of this report and was not answered.

On July 5 and 6, 2017, Human Rights Watch met with five local authorities, including the mayor of Rubavu district and authorities in Nyamyumba sector, Nyundo sector, and Rukoko cell in Rubavu district and the executive secretary in Boneza sector, Rutsiro district. These authorities denied that killings of thieves or criminals had taken place, but one did say that people who illegally crossed the border had been killed for failing to stop when ordered to do so by soldiers, and that this was for security reasons.

A sign welcoming visitors to Boneza, a sector in Rwanda’s Rutsiro district. Rwandan security forces killed at least 9 fishermen in Boneza, for using illegal fishing nets between September 2016 and March 2017. The bottom line of the welcome sign says in Kinyarwanda: “Do good things and do them quickly.” 

© 2017 Human Rights Watch

The Rwandan government should ensure an immediate end to the summary executions of suspected criminals by security forces. They should also ensure that thorough, impartial investigations into these serious violations are conducted, including to establish how and with whom any policy originated; and that those responsible for the violations be held accountable. Victims’ families should be compensated for the unlawful killings.

The Rwandan government should also respect the presumption of innocence, ensure anyone accused of a crime receives a fair trial, and enforce without exception an absolute prohibition on criminal punishment for anyone not convicted in a court of law.

Recommendations

To the Government of Rwanda

  • Investigate and prosecute as appropriate, in fair and credible trials, individuals from the Rwanda Defence Force, the Rwanda National Police, and other law enforcement agencies, such as the DASSO and the Inkeragutabara, responsible for extrajudicial executions, including officers who may bear command responsibility, and any civilian authorities who are implicated in the killings and may bear responsibility;
  • Ensure that all criminal suspects are lawfully detained in recognized places of detention, have prompt access to a lawyer, and are brought promptly after their arrest before an independent judge. If there is credible evidence against the accused, they should be promptly charged with an offense and prosecuted in fair, credible trials or else released;
  • Pending disciplinary action or criminal prosecution, suspend with pay officers suspected to be implicated in extrajudicial executions, including those from the Rwanda Defence Force, the Rwanda National Police, and other law enforcement agencies, such as the DASSO and the Inkeragutabara. Those found to be implicated in extrajudicial executions should be removed from their posts in addition to any other criminal sanctions imposed by an independent tribunal;
  • Publicly reiterate to officers of the Rwanda Defence Force, the Rwanda National Police, and other law enforcement agencies, such as the DASSO and the Inkeragutabara, that they have an obligation to protect the lives of all persons in Rwanda. Ensure that officers have been trained in and adhere to international human rights law, in particular the rights to life, bodily integrity, liberty, security, and fair trial. The Basic Principles on the Use of Force and Firearms by Law Enforcement Officials, that provide authoritative guidance on international legal standards in this regard, prohibit law enforcement officials from using intentional lethal force except when strictly unavoidable in order to protect life;
  • Ensure that all security agents, members of the judiciary, and administrative officials fully respect the right of all Rwandans to the presumption of innocence;
  • Ensure that the domestic legal system provides for the conduct of prompt, thorough and effective investigations in line with the standards in the Revised United Nations Manual on the Effective Prevention and Investigation of Extralegal, Arbitrary and Summary Executions (the Minnesota Protocol).

To Rwanda’s International Donors and Other Governments

  • Publicly and privately urge the Rwandan government to take concrete steps to investigate, arrest, and prosecute those responsible for extrajudicial killings described in this report, including those bearing command responsibility. Monitor the progress of these steps regularly;
  • Publicly and privately denounce extrajudicial killings committed by any member of the military or law enforcement;
  • Ensure support to Rwanda’s security forces—including training, logistics, and other material support—does not go to units or commanders who are implicated in extrajudicial executions and ensure that human rights training and support to investigations and prosecutions of security agent abuses are central components of reform efforts.

To the United Nations Special Rapporteur on Extrajudicial, Summary or Arbitrary Executions

  • Request a formal visit to Rwanda to investigate cases outlined in this report
    and others.

To the African Commission on Human and Peoples’ Rights

  • In accordance with the African Charter on Human and Peoples’ Rights, conduct an immediate investigation into the cases outlined in this report and others;
  • Urge the government of Rwanda to attend the forthcoming 61st ordinary session of the African Commission to ensure consideration of its combined 11th, 12th and 13th periodic report as well as consideration of the cases outlined in this report.

To the United Nations Department of Peacekeeping Operations

  • Carefully vet officers and personnel from the Rwanda Defence Force and the Rwanda National Police currently serving in United Nations peacekeeping missions to ensure none are implicated in extrajudicial executions in Rwanda;
  • Repatriate from United Nations peacekeeping missions any Rwandan soldier, police, or other personnel found to be implicated in extrajudicial executions
    in Rwanda.

Methodology

This report is based on research conducted in Rwanda between January and July 2017. Human Rights Watch interviewed 119 witnesses to the killings, family members and friends of victims, government officials, and others knowledgeable about the arrests and executions. The names of victims are provided throughout this report. However, for security reasons, the names of witnesses and relatives interviewed by Human Rights Watch are not included in the report, and other identifying information has also been withheld.

Some initial interviews were conducted over the phone. These interviews were followed up in person between March and June. Most interviews were conducted in Musanze, Rubavu and Rutsiro districts, in Kinyarwanda with an interpreter. All interviews were conducted individually and privately. Human Rights Watch explained to each interviewee the purpose of the interview, its voluntary nature, the way in which the interview would be used, and the fact that no compensation would be provided.

Human Rights Watch wrote the minister of justice, with copies delivered to the minister of defense, the minister of local government, and the national police commander, with an overview of Human Rights Watch’s research findings and the details of specific cases documented in this report (see Appendices I, II, III, and IV). Human Rights Watch received no response to its request for a meeting to discuss these research findings or to specific questions about the government’s response to the violations documented here. In July, Human Rights Watch met with five local authorities in Rubavu and Rutsiro districts. Their response is reflected in section III.

This report focuses specifically on extrajudicial executions and other violations in Rubavu and Rutsiro districts, in Western Province, between April 2016 and April 2017. Human Rights Watch has received credible reports of additional cases that allegedly occurred closer to the publication of this report, as well as cases in other areas of Rwanda, including Musanze district, in Northern Province, and Rusizi district, in Western Province. Human Rights Watch is working to confirm these cases, and they are not covered in this report.

I.Background

Since the genocide that devastated the country and claimed more than half a million lives in 1994, Rwanda has made great strides in rebuilding its infrastructure, developing its economy, and delivering public services. But civil and political rights remain severely curtailed, and freedom of expression is tightly restricted.

The death penalty was outlawed in Rwanda in 2007. Before that, it was used sparingly by the state. The death penalty was carried out in connection with genocide trials in 1998 when 22 people were publicly executed, many after summary trials and some without legal assistance.[1]

Extrajudicial killings, that is the killing of a person by governmental authorities without the sanction of any judicial proceeding or legal process, also occurred. For example, in November 2006, police shot and killed three men suspected of killing a gacaca judge[2] the evening of their arrest.[3] In 2007, Human Rights Watch published a report on police killings of at least 20 detainees, many of which appeared to have been extrajudicial executions.[4] In its annual report on Human Rights Practices in Rwanda, the US State Department expressed concern about the killings of five members of the Muslim community in 2016.[5]

Attacks on political dissenters have also occurred, both inside and outside of the country. Since 1996 some Rwandans have been killed outside of the country after they criticized the Rwandan government, the ruling party, the Rwandan Patriotic Front, or President Paul Kagame.[6] Others were murdered, attacked, threatened, or died in unclear circumstances inside the country.[7]

Civilians have also been held unlawfully in unofficial detention centers, including in military custody. In 2014, Human Rights Watch documented how at least 23 people were detained incommunicado for several weeks at Camp Kami, a military camp on the outskirts of Kigali.[8] The detainees were later tried by a civilian court for security-related offenses and alleged collaboration with armed groups. A court in Rubavu acquitted some of them and ordered their release. Some former detainees told Human Rights Watch they were tortured while held at Kami.[9]

Human Rights Watch has also documented a broader pattern of human rights violations against poor people, including petty criminals. Over the years, many such people have been unlawfully detained in so-called “transit centers,” where they faced beatings and other forms of ill-treatment.[10] Human Rights Watch documented the death of one individual just after leaving one such transit center, in Gikondo, Kigali, and received information about similar cases in Mudende transit center, in Rubavu district. Most officials involved in such violations, mainly police, have enjoyed absolute impunity.[11]

II.Extrajudicial Executions

The conduct of members of the Rwandan military, police and other state security actors in northwestern Rwanda has been as ruthless as it has been illegal. Human Rights Watch has documented 37 extrajudicial executions of suspected petty offenders in Rutsiro and Rubavu districts between July 2016 and March 2017, two of whom were women.[12] Human Rights Watch has also documented four enforced disappearances, between April and December 2016, and two cases of individuals who were beaten to death by local residents acting on the encouragement of local authorities, in August 2016 and April 2017. The victims included suspected thieves, smugglers, and people caught or accused of using illegal fishing nets. Some of the family members and friends of victims admitted that the victims had been involved in petty crimes, while others said they were innocent and had been wrongly accused. The killings and enforced disappearances appear to have been part of a broader strategy to spread fear, enforce order, and deter any resistance to government orders or policies.

Government Strategy

Over 40 people interviewed by Human Rights Watch said they had participated in community meetings in Rubavu and Rutsiro districts where military officers or local government officials declared that thieves would be arrested and killed. Local authorities in Rwanda, including law enforcement officials, hold regular community meetings at the village, cell, and sector level. These meetings in general are not mandatory, but several residents told Human Rights Watch they felt pressured to attend. The meetings are not on a fixed schedule, but there is at least one per month after umuganda, mandatory community work held the last Saturday of every month. Participation at the meeting after umuganda is obligatory. Some of these local meetings were called after residents had complained about the high crime rate in their villages.

Several people told Human Rights Watch that they thought a “law” had been adopted stipulating that all thieves and other criminals would be killed, referring to multiple statements made by military and local government officials about the killings of petty criminals.

These warnings at local meetings that authorities would no longer tolerate illegal activity—such as theft, fishing with illegal nets, or smuggling goods across the border—began in early 2016. The cases documented by Human Rights Watch of extrajudicial executions and enforced disappearances of suspected petty offenders by the Rwanda Defence Forces, the Rwanda National Police, DASSO[13], and the Inkeragutabara[14] began in April 2016.

One resident from the Kavolo cell[15] in Rubavu district told Human Rights Watch that local authorities delivered warnings in routine meetings: “In 2016, the authorities started saying things in meetings like, ‘We will kill people we catch stealing.’ It was usually the military officers who said this at cell and sector meetings.”[16]

On April 26, 2017, Major General Alexis Kagame, the military commander of the third division, which covers the Western Province, participated in a public meeting in Gisenyi in which he said that people who illegally crossed the border between Rwanda and Congo fell into three categories: those who smuggle goods into the country and want to avoid tax, thus robbing the country of its development; those who smuggle drugs into the country and want to kill the youth; and those who have links to the FDLR (the Democratic Forces for the Liberation of Rwanda, a largely Rwandan Hutu armed group, based in eastern Congo) and wish to destabilize the country.[17] Kagame said that people in these groups were “enemies of the country” and he called on citizens to protect the country from these enemies. Kagame promised close collaboration between the population and the army to safeguard security.[18] The mayor of Rubavu district, Jeremie Sinamenye, also participated in the meeting.

A participant at another public meeting on November 1, 2016, in Karongi district, organized by the Rwanda Governance Board and attended by many local leaders from the Western Province, told Human Rights Watch that Kagame said that all thieves would be killed.[19]

A resident of the Rukoko cell in Rubavu district, near the border with Congo, described how soldiers stood up “without fear” during village meetings, telling local residents: “We will kill anyone who crosses the border illegally.” The civilian authorities “just agree,” he added; “they can’t contradict the military.”[20]

Jean de Dieu Habiyaremye was arrested in late November 2016 and executed two days later.

© 2016 Private

Some witnesses spoke of lists that local officials established to identify those who should be killed. Two residents of Munanira cell, Rubavu district, told Human Rights Watch that military and civilian authorities organized a meeting in their village four days before the execution of Innocent Nshimiyimana, who was killed in neighboring Kiraga cell. The officer in charge of the local military post at that time said during the meeting, “Every thief has to be shot,” according to one of the witnesses.[21] The officer also said that the security services had established a list of all thieves to be eliminated, according to the other witness.[22] A resident of Nyabirasi sector, Rutsiro district, who saw the bodies of Jean de Dieu Habiyaremye and Pierre Hakizimana—two suspected thieves killed by security forces in November 2016—said he saw soldiers with a list that they showed to village leaders to tell them which individuals should be targeted.[23]

A resident of Kanama sector in Rubavu district told Human Rights Watch: “During meetings in our region, the authorities said that the thieves will be killed. I was then afraid that I could be beaten because I’m a family member of [one of the victims].” The resident added that, in February 2017, a meeting was organized in his village by military and local government officials. The officials ordered all thieves to come forward and ask for clemency, and then said: “If you steal again, we will kill you.” Several people who were apparently innocent stood up and asked for pardon, in fear of being killed if they did not do so, the witness said.[24]

Along the shores of Lake Kivu, similar warnings have been made about the use of illegal fishing nets (known in Kinyarwanda as kaningini). One resident of Bushaka cell in Rutsiro district told Human Rights Watch, “In local meetings, the authorities tell us to turn in local thieves. But they also talk about the [fishing] nets. They say the kaningini are not allowed. They say those caught with this net will be dealt with by the authorities.”[25] Another resident from Bushaka cell said that the authorities’ warnings about the nets have become more serious since 2016. “Before they told us not to use them and that we would be fined if we did,” he said. “But now, the authorities tell us during the meetings: ‘Whoever is caught with a kaningini net will have problems with us.’”[26] Another witness to a meeting in Bushaka cell told Human Rights Watch, “The soldiers told us at one meeting in 2016, ‘You have been thieves for a long time now. We forbid you from going into the lake with these nets. You want to steal all of our fish for yourselves? If you refuse to listen to us we will kill you.”[27] The kaningini net has smaller holes than a legal net and can catch more fish. However, it can also catch young fish and therefore contributes to diminishing the fish stock, which is why it is considered illegal.

In some cases, local military or civilian officials accused the victims of collaborating with or sharing intelligence with the FDLR. A participant in a community meeting in Mutovu cell in Rubavu district told Human Rights Watch that a local government official had said that everyone who goes to Congo without passing through the regular border crossing would be killed, and that there is a high probability they would have gone to Congo to collaborate with the FDLR.[28] Other witnesses told Human Rights Watch about community meetings where residents were accused of sending their children to Congo to join the rebels.[29]

Extrajudicial executions were also used after the fact to serve as a warning to community members. In most of the cases documented by Human Rights Watch, local military and civilian authorities told residents after the execution, often during public meetings, that the suspected petty offender had been killed and that all other thieves and other criminals in the region would be arrested and executed.

On the same day as Emmanuel Nzitakuze’s funeral in Tangabo cell in Rutsiro district, local security and civilian authorities held a community meeting. Soldiers had killed Nzitakuze after accusing him of stealing a motorcycle on January 11, 2017. The meeting was held near the place where Nzitakuze was killed in neighboring Haniro cell, and a police officer leading the meeting described the killing as an example of what could happen when people steal, according to a witness. Residents present at the meeting told Human Rights Watch that they were not aware that Nzitakuze was a thief, as it was the first time they heard he had stolen anything. But, one witness said, “the military authority is very strong. You cannot criticize anything in front of the military.”[30]

A resident of Busuku cell in Rutsiro district told Human Rights Watch that authorities often cite the execution of François Buhagarike, who was killed between October 19 and 20, 2016. “The authorities talk about his case in meetings. They say, ‘Someone who supports thieves will also have problems with us. Those caught stealing will be killed, like François. To anyone who knew François, if you steal, you will also be killed.’ All this was said by the military so it must be taken seriously. At the meetings, they intimidate us. They say, ‘We have guns and bullets, not stones.’”[31]

Approximately one week after the killing of Amulani Bazangirabate, who had been accused of using illegal fishing nets, the head of the Bushaka cell held a meeting with local residents at his office. According to a participant at the meeting, he told those gathered that “people should not go out in the water at night alone,” and that “all fishermen need to be in associations in order to use correct nets. For example, Amulani and these other students were fishing illegally. They were killed because they used an illegal net.”[32]

Amulani Bazangirabate was executed in late December 2016.

© 2016 Private

In most of the cases documented by Human Rights Watch, the victims were immediately buried by their families, without any medical examination. Several family members told Human Rights Watch that government officials forced them to do so. In some cases, police or family members brought bodies to a nearby hospital. An autopsy was conducted in a few cases, but family members received no information about the results and questioned the independence of the medical staff.

In many cases documented by Human Rights Watch, local civilian authorities were also involved in the extrajudicial executions, by alerting the military about suspected thieves, accompanying the police or military during the arrests of the victims, or by publicly expressing support for the killings. In one case, however, a village leader publicly opposed beatings by the military. The military responded that he should not have called them to intervene if he did not want the thief executed. They then shot and killed the victim, in front of the village leader. In the same case, the executive secretary of the sector also questioned the killings by the military. He lost his job a few days later. It is unclear whether this was related to his opposition to the extralegal execution; many local officials in the Western Province lost their job during the period covered by this report.

Extrajudicial Executions

Following is a selection of accounts from witnesses and people close to the victims killed by state security forces in Rubavu and Rutsiro districts. For a list of all the cases documented by Human Rights Watch, including the names of victims, the date and location of the extralegal execution, the security force responsible, and the offense the victim was accused of, see Appendix I. Details on the cases of enforced disappearances and individuals who were killed by local residents acting on encouragement from local authorities are included separately in Appendices II and III.

Bugarura island in Boneza sector, Rutsiro district. Rwandan security forces killed at least three fishermen from the island between September and December 2016. Another is missing and presumed dead. The men were killed because they were using illegal fishing nets. 

© 2017 Human Rights Watch

Jean Damascène Ntiriburakaryo, killed July 30, 2016

Ntiriburakaryo, approximately 44-years-old, was beaten to death by soldiers in Bubaji village, in Rubavu district, after missing umuganda, or mandatory community work. Ntiriburakaryo had stayed home to slaughter a goat. A resident of Bubaji told Human Rights Watch that when he and others heard that Ntiriburakaryo had been killed, they went to his home. As they arrived, they encountered the soldiers who had killed Ntiriburakaryo. “One of the officers showed regret for having killed Jean,” he said. “But he said they had no choice but to beat him seriously because he was against the state’s programs. He said: ‘This will give you a good example to never rebel against the state.’”[33]

Jean Kanyesoko, killed August 2, 2016

Jean Kanyesoko was executed on August 2, 2016

© 2016 Private

Soldiers killed Kanyesoko, 64 and a father of five, after he was caught stealing sugar cane near Kinihera village in Rubavu district. A family member of Kanyesoko said, “Because of poverty he would steal things. He would sometime steal people’s crops.”[34]

A guard at the sugar cane field captured Kanyesoko and called soldiers stationed nearby, who shot him dead. The soldiers later called Kanyesoko’s neighbors to come and take away his body. One friend described what they saw when they arrived:

A soldier was standing next to his body. He said they caught him red-handed. He said, “The order to kill thieves has been given; take his body away and bury him.” Military officers continue to talk about him in cell and sector meetings. They say, “Those caught stealing will be killed like Jean.” I can’t go to meetings now because of this talk of killing criminals. They should just have put this old man in prison.[35]

Innocent Mbarushimana, killed October 11, 2016

Mbarushimana, 20, was accused of stealing several bananas in Kabeza village in Rubavu district. A resident told Human Rights Watch what happened: “I heard people yelling that Innocent was arrested by the military and the Inkeragutabara. They were marching him through the village and saying that he had stolen bananas. A lot of people from the village were there watching, so I tried to go see what was going on. I heard that a decision was made to send Innocent to the sector office so they could investigate. But then I heard shots. Kids then came running and they said that Innocent had been killed.”[36]

Another resident of Kabeza told Human Rights Watch that he tried to follow Mbarushimana to the sector office, but he was chased away by the soldiers. He said he was nearby when he heard the shots and that kids came running and said they saw an Inkeragutabara shoot him.[37]

A third resident of Kabeza also tried to follow Mbarushimana when he was taken to the sector office, but he too was pushed away. He told Human Rights Watch that a child he knows came running after the shots were fired and said, “A soldier gave his gun to an Inkeragutabara and he shot Innocent in the head.”[38]

Four residents of Kabeza who later saw Mbarushimana’s body told Human Rights Watch that he had been shot in the back of the head.

Pierre Hakizimana, killed November 28, 2016

Hakizimana, 35 and the father of five, guarded cows in Rutsiro and Rubavu districts. A local authority in Busuku cell in Rutsiro district accused him of being a thief, and soldiers then arrested him. People close to Hakizimana were told that he was detained at the cell office, so they went to visit him there the next day.

One of them told Human Rights Watch what happened when they arrived:

There were 10 of us, members of the family and neighbors. As we approached Busuku, villagers told us that they had seen soldiers take [Hakizimana] to a nearby tea field, so we went in that direction. When we arrived, we saw soldiers standing around Pierre’s body. One of them said, “Take the body and leave.” When we got to his body, I wanted to cry. But the soldier told us, “Do not cry for a thief.” I was sad and shocked; they would not even let the family mourn... A few weeks after Pierre’s death there was a meeting and the soldiers said, “All thieves will be killed. Look at what happened to Pierre.”[41]

Jovan Karasankima, killed between November 28 and 29, 2016

Karasankima, 40 and the father of three, was accused of stealing a sheep and a lamb in Kavumu village in Rutsiro district. Local authorities and the Inkeragutabara caught Karasankima. The authorities told someone close to him that he would be brought to the police. However, members of the Inkeragutabara instead beat him to death. Witnesses who saw the body told Human Rights Watch that he had been beaten all over his body.[39]

Someone close to Karasankima went to the police in Kavumu and asked why no case had been opened against the killers. He said, “The police told me he was killed by the Inkeragutabara on the orders of the authorities of the cell. He said an order was given to kill thieves and then he told me to go away.”[40]

Fulgence Rukundo, killed December 6, 2016

Fulgence Rukundo was executed on December 6, 2016.

© 2016 Private

Rukundo, approximately 28 and the father of two, was detained by a local government official and six soldiers at his home in Munanira village in Rubavu district in the early morning of December 6. Witnesses to his arrest said he was questioned about a stolen cow. Rukundo did not resist arrest and was told he needed to show the authorities where another man accused of the same crime lived.[42]

Later that morning a witness said he saw Rukundo walking towards the BRALIRWA brewery near the lake, where a meeting was taking place, carrying the carcass of a dead cow:

He had his hands tied in front of him and he had this cow carcass on his back and on his arms. The cow’s head was on his own head. Six soldiers told him to walk and there were maybe a hundred villagers following. I followed too. They took him to a primary school near the brewery where a meeting with the mayor of Rubavu had already started. The mayor was talking about the problem of thieves, and when we arrived the meeting turned to Fulgence.

The mayor said that Fulgence had killed another person's cow. Fulgence denied it but he was not allowed to speak. He was just yelling, “I’m innocent!” But the soldiers next to him shouted, “No, you are a thief!” The mayor agreed with the soldiers. The mayor and the soldiers started to write on a piece of paper and then they each signed it. The mayor then announced, “This paper declares that thieves caught will be killed directly.” Some people applauded this; others asked for Fulgence to be forgiven. But the mayor said, “All thieves must be killed.” He said it was an order.

When the meeting was finished, the soldiers walked Fulgence to a small field near a banana plantation. We tried to follow, but the soldiers told us to stay away. There were many of us following; some were primary students. We wanted to see what would happen.

I heard Fulgence say, “I’m tired,” and the soldiers told him to sit down. They untied his hands and they took the cow carcass off of him… A soldier told him to stand up and walk and another soldier told us to leave. At that moment, I heard three shots. The soldiers then yelled at us to leave and we were scared so we ran.[43]

Rukundo’s body was later taken to the morgue in Gisenyi.

Thaddée Uwintwali, killed December 13, 2016

Thaddée Uwintwali was executed on December 13, 2016.

© 2016 Private

In the evening of December 13, five soldiers arrived at the home of Uwintwali, a farmer in Murambi village in Rutsiro district. An individual close to Uwintwali said they knocked on the door and summoned him outside into the courtyard where they questioned him about a stolen goat and then started to beat him. The soldiers then took him away.

Friends and family started to look for Uwintwali early the next morning. Someone close to the family told Human Rights Watch, “We went over [to Uwintwali’s house] first thing the next morning. We were mobilizing to look for him when a man came and said he saw the body on the road about a twenty-minute walk away. We went there and found Thaddée’s body. He had been shot through the chest.”[44]

Two weeks after Uwintwali was killed, soldiers announced at a Boneza sector meeting: “If someone is caught stealing they are going to have a problem with us.”[45]

Jeannine Mukeshimana and Benjamin Niyonzima, killed December 16, 2016

Jeannine Mukeshimana was executed on December 16, 2016.

© 2016 Private
Mukeshimana, 22 and a mother of one, and Niyonzima, 21 and a father of one, were killed after allegedly smuggling marijuana across the border from Congo to Bisizi village in Rubavu district. They were crossing the border with four other individuals, three of whom were also killed.[46] According to local residents, Mukeshimana and Niyonzima were known in the community for smuggling goods across the border, including drugs and minerals.

Residents of Bisizi told Human Rights Watch they heard shots in the valley near the border with Congo in the evening of December 16. The next day, local authorities told residents to go to the border to identify the bodies. Someone close to Mukeshimana told Human Rights Watch what happened next: “When I arrived, I saw many soldiers standing around the bodies. One soldier said, ‘Look! But no photos! Let this be an example for you that those who travel across the border illegally will be killed like this. These people were transporting marijuana.’ I saw Jeannine among the bodies. I was traumatized.”[47]

Benjamin Niyonzima was executed on December 16, 2016. 

© 2016 Private

Another resident told Human Rights Watch, “We went to see the five bodies. Jeannine had been shot in the head. The message from the military was clear. They said she was smuggling marijuana and that this should be an example for the village.”[48]

The same night soldiers went to Niyonzima’s home village, Kanembwe, and told the village chief in front of several residents that they had killed Niyonzima because he was smuggling marijuana.[49]

Emmanuel Niyigena, killed January 25, 2017

A month after Mukeshimana and Niyonzima (above) were killed, 25-year-old Niyigena was killed in the same area. The bricklayer was arrested and then killed by soldiers as he came back from Congo. A witness to his arrest told Human Rights Watch: “When we had crossed the border from Congo and after we walked 50 meters inside Rwanda, we ran into four Rwandan soldiers. They stopped us, took Emmanuel and went with him into the bush. A few minutes later, we heard several gunshots. They had killed him.”[50] Several other witnesses told Human Rights Watch that his face had been destroyed by multiple bullets. Soldiers later told the family that they suspected him of smuggling drugs.

Executions of Fishermen Using Illegal Fishing Nets

Human Rights Watch documented the killings of 11 fishermen on or near Lake Kivu in Bushaka and Gabiro cells in Rutsiro district and in Rubona cell in Rubavu district. According to family members, friends, and other community members, the victims were all killed because they had used illegal fishing nets, known as kaningini. The kaningini net has smaller holes than a legal net and can catch more fish. However, it can also catch young fish and therefore contributes to diminishing the fish stock, which is why it is considered illegal.

Local authorities, including military and police officers, had warned residents for several years that it was illegal to use these nets, but by 2016 the warnings turned to threats. A fisherman who uses a kaningini told Human Rights Watch, “In meetings the authorities would say, ‘Don’t use the kaningini.’ Then in 2016 they started to say, ‘We are tired of this. Whoever is caught will now have problems with us.’ But because of poverty we have no choice but to keep using the nets.”[51]

The executions on Lake Kivu all happened at night when the victims were fishing from canoes. Several of the victims were fishing with other men, who survived the killings by jumping into the water.

Identity card of Juma Ntakingora, 27, who was killed on September 21, 2016, while fishing near Bugarura village in Bushaka cell. 

© 2016 Private

Juma Ntakingora, 26, was killed on September 21, 2016, while fishing near Bugarura village in Bushaka cell. Someone close to Ntakingora told Human Rights Watch: “He was fishing with a friend who later came and told us that they had been attacked by the military patrol boat, that it just came upon them and the soldiers started shooting. We went down to the lake the next day and found his body. He was still in the canoe; it was along the shore. Juma had been shot in the stomach.”[52]

Identity card of Vedaste Renzaho, 35, who was killed in late December 2016, while fishing near Bugarura village in Bushaka cell. 

© 2016 Private

Vedaste Renzaho, 34, was killed in late December 2016 while fishing. He was with another man, who survived the attack and later told Human Rights Watch:

We had been fishing for about two hours when we heard the motor of a military boat. Then we saw its lights. I said to Vedaste, “If you see a boat like that at night, it is looking for us; we should go back in.” But he said, “No, don’t be afraid. They won’t find us.” But when the boat got closer, I decided it was too dangerous. Vedaste could not swim. I said, “Ok, you stay in the boat.” Because I’m a good swimmer, I jumped into the water. I hoped that they would just take the net. I watched from a distance as the soldiers approached the boat. I heard one of them say to Vedaste, “Where is the other guy?” He said, “He jumped into the water.”… They looked at the net and asked why he used it. Then they shot him. They then took a big light and started looking for me, but I swam away.[53]

Local residents found Renzaho’s body the next day, in his canoe along the shore. He had been shot in the stomach.

Alexandre Bemeriki, a fisherman and father of four, was killed in October 2016 after soldiers found kaningini at his home. Someone close to Bemeriki told Human Rights Watch, “Soldiers went to his house around 9 p.m. and took him outside. I saw them put his hands behind his back. They started to beat him and told him to bring out his fishing net.

Alexandre Bemeriki was executed in October 2016.

© 2016 Private

He was asking forgiveness… The next day we heard that there was a body down near the lake. We went to look and we found Bemeriki’s body. He had been shot in the chest.”[54]

The village chief who was there when the body was discovered told Bemeriki’s family members, “You are poor and you can’t pay for an autopsy. So because you are poor, just bury him.”[55]

As with other cases of extrajudicial executions, local civilian, military, and police authorities were open with community members about the killings and sought to use them as examples. A resident of Bugarura told Human Rights Watch about a meeting organized by the police at the sector office in late December, soon after Amulani Bazangirabate, 22, was shot dead by soldiers:

The police said that people should not go out in the water at night alone and that all fishermen need to be in associations so they use correct nets.

The executive secretary of the Boneza sector then said, “For example Amulani and Nyumagabo[56] could not be allowed to fish illegally. They were killed because they used an illegal net.”[57]

Despite the risks, people continue to use the kaningini. One fisherman told Human Rights Watch, “They say not to use them, but we have no choice. We must eat. People still fish with it because they have no choice.”[58]

Killed by Civilians after Encouragement from Local Authorities

Human Rights Watch documented two cases of men killed by civilians after being told to do so by local authorities.[59] There may be more cases of this nature as Human Right Watch spoke with people who participated in meetings in which this was encouraged. For example, one participant at a meeting in Nyundo sector, Rubavu district, told Human Rights Watch, “The mayor of the district told the population to stop keeping livestock in their homes, but the population said there was
a problem with thieves. So the mayor said that if there are thieves amongst us, we should
kill them.”
[60]

Claude Barayavuga, killed April 27, 2017

Barayavuga was a 19-year-old with intellectual disabilities from Bahimba village, Rubavu district. He had a history of stealing in his community. People close to Barayavuga told Human Rights Watch that this was because of his disability. “If he saw sugar cane or maize that was ready to eat, he would take it,” one person said. “He did this because he was sick and he did not really understand that he should not do it. He would steal a lot.”[61]

On April 23, the village chief held a meeting and, according to a participant, told local residents: “I have been asked to give a list of criminals and thieves to the cell officials. I know there is one thief, Jean-Claude. If you catch him, kill him.”[62]

On April 27, Barayavuga stole two light bulbs from a private citizen who chased him down and beat him to death with a hammer. The police arrested the man suspected of killing Barayavuga, but he was released a few days later. Another resident told Human Rights Watch, “Claude’s death was sanctioned. Just a few days before he was killed, I heard the chief say at a meeting, ‘If Jean-Claude is caught stealing again, kill him.’”[63]

On May 3, the executive secretary of Nyundo sector held a meeting in Gatuvo, a commercial center near Bahimba. According to three witnesses, he told residents at the meeting, “the death of Jean-Claude is an example for all thieves.”[64]

Identity card of Claude Barayaguyva, a 19-year-old with intellectual disabilities from Bahimba village, Rubavu district, who was beaten to death by a local resident after encouragement from local authorities. 

© 2016 Private

Threats to Family Members

In almost all the extrajudicial killings documented by Human Rights Watch, family members of victims were too afraid to seek justice, despite their right under Rwandan and international law to do so (see section IV). The reason for this was best summed up by the uncle of one victim: “Who could we accuse even if we wanted to? These men are killed by the state, and you can’t accuse the authorities of the state.”[65]

Many family members were threatened when they tried to recover the bodies of their loved ones. The authorities told them not to inquire about what happened, and not to grieve. Some families buried the body in secret, to avoid any reprisals from the authorities. Several families left their villages when their husbands, sons, or brothers were killed, fearing that they could also be targeted.

“They told me they had taken [my husband] to the forest,” a widow told Human Rights Watch. “When we arrived there, we saw the soldiers and then we saw [the body]. The soldiers told us not to be sad and not to cry. They said if we dared to cry, we would risk being shot.”[66]

“Since the killing, our community is very saddened,” a witness to one of the killings told Human Rights Watch. “We decided to keep our mouths shut; we cannot talk about this incident. We have no right to free expression. If we talk about this, we will end up in prison or disappear.”[67]

In a few cases, family members of victims did try to seek justice, but they were discouraged by local authorities. The widow of one victim from Rutsiro district told Human Rights Watch that she sought justice in the village where her husband was killed:

I went to the police, and I asked why there was no case against the man who killed my husband. I was told that an order had been given and I was to go away. They told me he was killed on orders of the authorities of the cell. When the police told me to leave, I knew I had no choice. I wanted [my husband]’s ID but the police said, “No, it’s for us.” Now I don’t dare to return to get it. They scare me… When the police said, “the order was given,” I was so disappointed. But if the police helped to investigate and if I had money for a lawyer, I would file a case against those who killed my husband.[68]

Most family members were simply too scared to inquire into the killings. The widow of one victim told Human Rights Watch, “The things I’ve told you I can’t say to the authorities because I could be killed as well. I live in fear. I don’t understand where this order to kill thieves comes from. But now I wonder if they will decide to kill the widows of men they accused of stealing.”[69]

III.Government Response to Extrajudicial Executions

On July 5, 2017, Human Rights Watch delivered a letter[70] to Johnston Busingye, minister of justice, outlining its research on extrajudicial executions in Rubavu and Rutsiro, highlighting concerns, asking for further information, and requesting a meeting. Copies were also delivered to the ministers of defense and local government and the head of the police. The appendices in this report were attached to the letter. None of these officials responded to Human Rights Watch.

On July 5 and 6, Human Rights Watch met with five local officials from some of the areas where the violations documented in this report took place. The mayor of Rubavu district, Jeremie Sinamenye, told Human Rights Watch that the reports of extrajudicial executions of thieves and drug smugglers in Rubavu were based on false information:

What the people are telling you is not true. We are preparing for elections and in this period, there are many rumors. These lies come from the FDLR and the abacengezi[71] to destabilize the country. This is Habyarimana’s region[72] and there are still people loyal to him in Congo. In Rwanda, we follow the law. If someone is suspected of a crime, they are taken to the police and they will go to court. The military do not participate in the affairs of the population. There is no new law saying that thieves should be killed. There is nothing of the kind. This is all rumors.[73]

The executive secretary of Nyundo sector in Rubavu district, Jean Bosco Tuyishime, told Human Rights Watch he had only been in his post for three months and could not answer questions about the extrajudicial executions and other violations. He said the district mayor’s response to Human Rights Watch also represented his own response.[74]

Ernest Tuyishime was executed on August 5, 2016.

© 2016 Private

The executive secretary of Nyamyumba sector in Rubavu district, Elisaphan Ugiriribambino, also told Human Rights Watch that he was new to his post, he was appointed in March 2017, and that he had not heard about the executions of Fulgence Rukondo and Innocent Nshimiyimana. He said, “I do not think the military could kill people here. I think this is lies. There has been no order here in Rubavu to kill thieves.”[75]

The executive secretary of Rukoko cell in Rubavu district, Chantal Mukeshimana, told Human Rights Watch that Ernest Tuyishime, Jeannine Mukeshimana, Benjamin Niyonzima and others were killed by the military while illegally crossing the border. However, she explained that these killings were not because of crimes they had committed or drug smuggling, but because they refused to stop when told to by the soldiers. “Instead they ran,” she told Human Rights Watch. “The military then had no choice but to shoot them; it is a security issue.” Mukeshimana told Human Rights Watch that she is not aware of any order to execute suspected thieves.[76]

Etienne Nirere, the executive secretary of Boneza cell in Rutsiro district, where Human Rights Watch documented the killings of 11 fishermen between September 2016 and March 2017, told Human Rights Watch that while the kaningini nets have been illegal since 2006, nobody had been killed for using them. Human Rights Watch shared its research findings with Nirere, and he suggested that many missing fishermen presumed dead may have left for Lake Victoria, between Uganda and Kenya, for work. When told by Human Rights Watch of testimony indicating the 11 bodies had been found, he said, “Many fishermen drown in the water; the boats can be turned over by waves.” When told of testimony of wounds indicating the fishermen had been shot, Nirere said, “I don’t know about that, but the military and the police do not kill people.”[77] Nirere told Human Rights Watch he was not aware of any order or policy to kill thieves.

IV. National and International Legal Standards

The rights to life, to bodily integrity, liberty and security as well as to due process and a fair trial, including the presumption of innocence, are guaranteed in the Rwandan constitution and international law. According to Rwandan law, a police officer may only use firearms when he or she has unsuccessfully tried other means of force, is subject to violence, or is fighting or arresting armed persons. There did not appear to be any threat to the lives of security personnel or others in any of the cases documented by Human Rights Watch. None of the victims were armed, and there was no evidence that any of the suspects had used violence, either when committing any crime or at the time of arrest.

The Rwandan Constitution

There is no legal basis for executions in Rwanda, judicial or extrajudicial, as the death penalty was abolished in 2007. In the cases documented by Human Rights Watch, no procedures were undertaken to establish the guilt of suspected criminals before executing them and statements and acts by soldiers preceding the killings denied a presumption of innocence.

The executions documented in this report violate several key articles of the constitution:

  • Article 12 states that “no one shall be arbitrarily deprived of life.”
  • Article 13 states that “a human being is sacred and inviolable [and] the state has an obligation to respect, protect and defend the human being.”
  • Article 15 states that “all persons are equal before the law. They are entitled to equal protection of the law.”
  • Article 29 states that “everyone has the right to due process of law, which includes the right: (1) to be informed of the nature and cause of charges and the right to defence and legal representation; (2) to be presumed innocent until proven guilty by a competent Court; [and] (3) to appear before a competent Court…”[78]

International Conventions and Standards

International human rights law obligates governments to end impunity for serious human rights violations by undertaking prompt, thorough, and impartial investigations of alleged human rights violations, ensuring that those responsible for serious violations are prosecuted, tried and duly punished, and providing an effective remedy for victims.[79]

Rwanda is a party to a number of international treaties (such as the International Covenant on Civil and Political Rights and the African Charter on Human and Peoples’ Rights) that strictly prohibit arbitrary deprivation of life, arbitrary detention, and ill-treatment of detainees, and that also require due process and fair trial. Under those treaties it has assumed legal obligations to deter and prevent gross violations of human rights, and to investigate, prosecute and remedy such violations.[80] This also entails addressing the victims’ rights to justice and reparations.[81]

The International Covenant on Civil and Political Rights (ICCPR) requires that governments adopt measures, including through the legal system, to protect fundamental rights.[82] According to the UN Human Rights Committee, the independent expert body that monitors compliance with the ICCPR, a government’s failure to investigate and bring perpetrators to justice, particularly with respect to crimes such as killings, may itself be a violation of the covenant.[83]

Similarly, the African Charter on Human and Peoples’ Rights places obligations on states to ensure protection of charter rights, and for individuals to have rights violations against them heard by competent national institutions.[84]

Various international standards also seek to promote state efforts to obtain justice for victims. For instance, the Principles on the Effective Prevention and Investigation of Extralegal, Arbitrary and Summary Executions call upon governments to remove officials implicated in such crimes from direct or indirect power over the complainants and witnesses, as well as those conducting the investigation.[85]

Combating impunity requires the identification of the specific perpetrators of the violations. Superiors may also be responsible for the unlawful acts of their subordinates, where the superior had effective control over their subordinates, knew or had reason to know of the unlawful acts, and failed to prevent or punish those acts.[86]

In addition to the obligation to investigate and prosecute, governments have an obligation to provide victims with information about the investigation into the violations.[87] The former UN Commission on Human Rights adopted principles stating that “irrespective of any legal proceedings, victims, their families and relatives have the imprescriptible right to know the truth about the circumstances in which violations took place.”[88]

Under the ICCPR, states also have an obligation “to ensure that any person whose rights or freedoms as herein recognized are violated shall have an effective remedy.”[89] The ICCPR imposes on governments the duty to ensure that any person shall have their right to an effective remedy “determined by competent judicial, administrative or legislative authorities, or by any other competent authority provided for by the legal system of the state, and to develop the possibilities of judicial remedy.”[90] The state is under a continuing obligation to provide an effective remedy; there is no time limit on legal action.[91]

The UN Basic Principles on the Use of Force and Firearms by Law Enforcement Officials state that “law enforcement officials shall not use firearms against persons except in self-defence or defence of others,” “only when less extreme means are insufficient to achieve these objectives,” and that intentional lethal use of firearms should only happen “when strictly unavoidable in order to protect life.”[92]

Acknowledgments

This report was researched and written by researchers in the Africa Division at Human Rights Watch. Ida Sawyer, Central Africa director, and Babatunde Olugboji, deputy program director, edited the report. Aisling Reidy, senior legal advisor, provided legal review. Jean-Sébastien Sépulchre, associate in the Africa division, provided additional editorial assistance. John Emerson provided the maps. Olivia Hunter, Jose Martinez, and Fitzroy Hepkins provided production assistance.

Sarah Leblois translated the report into French. Jean-Sébastien Sépulchre and Peter Huvos, French website editor, vetted the French translation.

Human Rights Watch wishes to thank the family members and friends of victims who spoke with us, sometimes at great personal risk.

[1] See Human Rights Watch report, Rwanda: Justice After Genocide – 20 Years On, March 2014, https://www.hrw.org/news/2014/03/28/rwanda-justice-after-genocide-20-years.

[2] Gacaca, which took its name from a community-based dispute resolution mechanism, was a novel system for trying the enormous number of genocide cases in Rwanda. Its objectives included not only delivering justice, but also strengthening reconciliation, and revealing the truth about the genocide. See Human Rights Watch report, Justice Compromised, May 31, 2011, https://www.hrw.org/report/2011/05/31/justice-compromised/legacy-rwandas-community-based-gacaca-courts.

[3] See Human Rights Watch report, Killings in Eastern Rwanda, January 2007, https://www.hrw.org/report/2007/01/22/killings-eastern-rwanda.

[5] See US State Department, Bureau of Democracy, Human Rights and Labor, “Rwanda 2016 Human Rights Report”, 2017, https://www.state.gov/documents/organization/265502.pdf (accessed July 9, 2017).

[6] See Human Rights Watch, Rwanda: Repression Across Borders, January 28, 2014, https://www.hrw.org/news/2014/01/28/rwanda-repression-across-borders.

[7] One of the darkest moments in recent years was the period preceding the 2010 presidential elections, when an independent journalist and the vice-president of an opposition party were murdered, and several other opponents and critics arrested and threatened. For a chronology of these events, see Human Rights Watch news release, Rwanda: Silencing Dissent Ahead of Elections, August 2, 2010, https://www.hrw.org/news/2010/08/02/rwanda-silencing-dissent-ahead-elections.

[8] See Human Rights Watch news release, Rwanda: Spate of Enforced Disappearances, May 16, 2014, https://www.hrw.org/news/2014/05/16/rwanda-spate-enforced-disappearances.

[9] Human Rights Watch interviews with former detainees at Kami, in Musanze, and in Rubavu, October 2014.

[10] See Human Rights Watch news release, Rwanda: Locking Up the Poor, July 21, 2016, https://www.hrw.org/news/2016/07/21/rwanda-locking-poor.

[11] See Human Rights Watch report, Why Not Call This Place a Prison?, September 24, 2015, https://www.hrw.org/report/2015/09/24/why-not-call-place-prison/unlawful-detention-and-ill-treatment-rwandas-gikondo.

[12] Rwanda is divided into provinces, districts, sectors and cells. The district is the basic political-administrative unit of the country. See Republic of Rwanda, Ministry of Local Government, http://www.minaloc.gov.rw/index.php?id=450 (accessed July 9, 2017).

[13] In May 2013, the government established the District Administration Security Support Organ (DASSO) to replace the Local Defense Force, a citizens’ self-protection force created by Rwandan authorities after the genocide. See “Law N°26/2013 of 10/05/2013 Establishing the District Administration Security Support Organ (DASSO) and Determining its Responsibilities, Organization and Functioning,” on file with Human Rights Watch.

[14] The Inkeragutabara are a part-time military service of the Rwanda Defence Forces who often patrol at night. See “Presidential Order N° 33/01 of 03/09/2012 Determining the Organisation and Responsibilities of each of the Military Services of Rwanda Defence Forces,” on file with Human Rights Watch.

[15] There are over 2,000 cells in Rwanda, the administrative division between sector and village.

[16] Human Rights Watch interview with resident of Rubavu district, May 18, 2017.

[17] Samba Cyuzuzo, “Maj Gen Kagame avuga ko abo ku Gisenyi baca ku mipaka itazwi ari abanzi,” Umuseke, April 26, 2017, https://umuseke.rw/maj-gen-kagame-avuga-ko-abo-ku-gisenyi-baca-ku-mipaka-itazwi-ari-abanzi.html (translation on file with Human Rights Watch).

[18] Ibid.

[19] Human Rights Watch interview, January 18, 2017. For tweet by Rwanda’s Western Province officials on the meetings see: https://twitter.com/RwandaWest/status/793466050637627393 (accessed July 9, 2017). Translation from Kinyarwanda to English: “These objectives are based on the theme: citizen-based governance, a pillar of sustainable development."

[20] Human Rights Watch interview with resident of Rubavu district, May 18, 2017.

[21] Human Rights Watch interview with witness, February 1, 2017.

[22] Human Rights Watch interview with witness, February 1, 2017.

[23] Human Rights Watch interview with witness, February 27, 2017.

[24] Human Rights Watch interview with resident of Rubavu district, February 21, 2017.

[25] Human Rights Watch interview with resident of Rutsiro district, June 14, 2017.

[26] Human Rights Watch interview with resident of Rutsiro district, June 13, 2017.

[27] Human Rights Watch interview with resident of Rutsiro district, June 13, 2017.

[28] Human Rights Watch interviews with resident of Ruvabu district, March 18, 2017.

[29] Human Rights Watch interviews with witnesses, February 1, 2017.

[30] Human Rights Watch interview with resident of Rutsiro district, February 8, 2017.

[31] Human Rights Watch interview with resident of Rutsiro district, June 14, 2017.

[32] Human Rights Watch interview with resident of Rutsiro district, June 13, 2017. Bazangirabate had been fishing with two other people the evening he was killed. One of them is missing and presumed dead, but his body was never found.

[33] Human Rights Watch interview with resident of Rubavu district, May 23, 2017.

[34] Human Rights Watch interview with resident of Rubavu district, May 18, 2017.

[35] Human Rights Watch interview with resident of Rubavu district, May 18, 2017.

[36] Human Rights Watch interview with resident of Rubavu district, May 24, 2017.

[37] Human Rights Watch interview with resident of Rubavu district, April 19, 2017.

[38] Human Rights Watch interview with resident of Rubavu district, May 24, 2017.

[39] Human Rights Watch interview with resident of Rutsiro district, February 21, 2017; and Human Rights Watch interview with resident of Rutsiro district, May 17, 2017.

[40] Human Rights Watch interview with resident of Rutsiro district, May 17, 2017.

[41] Human Rights Watch interview with resident of Rutsiro district, June 14, 2017.

[42] Human Rights Watch interview with resident of Rubavu district, June 14, 2017.

[43] Human Rights Watch interview with resident of Rubavu district, June 15, 2017.

[44] Human Rights Watch interview with resident of Rutsiro district, June 14, 2017.

[45] Human Rights Watch interview with resident of Rutsiro district, June 7, 2014.

[46] Human Rights Watch has not confirmed the identities of the three other victims, so they are not included in the list of cases it has documented.

[47] Human Rights Watch interview with resident of Rubavu district, March 13 and May 18, 2017.

[48] Human Rights Watch interview with resident of Rubavu district, May 18, 2017.

[49] Human Rights Watch interview with resident of Rubavu district, March 28, 2017.

[50] Human Rights Watch interviews with resident of Rubavu district, April 6, 2017.

[51] Human Rights Watch interview with resident of Rutsiro district, June 13, 2017.

[52] Ibid.

[53] Human Rights Watch interview with resident of Rutsiro district, June 15, 2017.

[54] Human Rights Watch interview with resident of Rutsiro district, June 14, 2017.

[55] Human Rights Watch interview with resident of Rutsiro district, June 14, 2017.

[56] Nyumagabo, a 17-year-old boy, was fishing with Bazangirabate. His body was never found, and Human Rights Watch has not included his death in the list of confirmed extrajudicial executions.

[57] Human Rights Watch interview with resident of Rutsiro district, June 13, 2017.

[58] Human Rights Watch interview with resident of Rutsiro district, June 14, 2017.

[59] Human Rights Watch can find no public statements by police condemning mob justice in Western Province. However, in recent months there have been at least three public statements by the police in the Southern Province, one in the Eastern Province, and one in the capital, Kigali, telling citizens not to engage in “self-administered” justice against suspected thieves. For example, on March 8, 2017, the police issued a statement regarding the killing of Jean Bikorimana, accused of stealing rabbits. In the statement, Andre Hakizimana, police spokesman for Southern Province, said, “A crime can’t be rectified by a crime. The justice sector is there to ensure that when a crime is committed, professionals and accredited institutions handle it appropriately. When you take matters into your own hands, you have committed a crime and you will be prosecuted... Everyone has the right to defend himself or herself in courts of law.” On the statement in Southern Province, see “Police warns against self-administered justice,” Rwanda News Agency, March 8, 2017, http://rnanews.com/national/12823-police-warns-against-self-administered-justice (accessed July 9, 2017); “Police warns against self-administered justice,” Rwanda National Police news release, April 11, 2017, http://www.police.gov.rw/news-detail/?tx_ttnews%5Btt_news%5D=9292&cHash=59aa987028dd5d5d6f43b4aaa778bd08 (accessed July 9, 2017); and “Police condemns ‘self-administered justice’ as two are arrested,” Rwanda Eye, January 20, 2017, http://rwandaeye.com/police-condemns-self-administered-justice-as-two-are-arrested/ (accessed July 9, 2017). This article, describing a crime that occurred in Nyamagabe district, Southern Province, erroneously presents Hakizimana as the police spokesman of Western Province. On the statement in the Eastern Province, see “Rwamagana: DPC cautions against ‘self-administered justice,’” Rwanda National Police news release, March 26, 2017, http://www.police.gov.rw/news-detail/?tx_ttnews%5Btt_news%5D=9181&cHash=9fd7176b0f5be3bd6ffddc1cb99576d4 (accessed July 9, 2017). On the statement in Kigali, see “Police hunt three suspects for lynching street children,” The East African, May 6, 2017, http://www.theeastafrican.co.ke/Rwanda/News/Police-hunt-suspects-lynching-street-children/1433218-3915790-147xfglz/index.html (accessed July 9, 2017).

[60] Human Rights Watch interview with resident of Rubavu district, February 21, 2017.

[61] Human Rights Watch interview with resident of Rubavu district, May 17, 2017.

[62] Human Rights Watch interview with resident of Rubavu district, May 16, 2017.

[63] Human Rights Watch interview with resident of Rubavu district, May 17, 2017.

[64] Human Rights Watch interview with resident of Rubavu district, May 17, 2017.

[65] Human Rights Watch interview with resident of Rutsiro district, June 13, 2017.

[66] Human Rights Watch interview with widow of victim, February 8, 2017.

[67] Human Rights Watch interview with witness, March 16, 2017.

[68] Human Rights Watch interview with resident of Rutsiro, June 13, 2017.

[69] Human Rights Watch interview with resident of Rutsiro, June 13, 2017.

[70] See Appendix IV for a copy of the letter.

[71] ‘Infiltrator’, or ‘abacengezi’ in Kinyarwanda, is a term often used to describe those who wish to destabilize Rwanda, particularly those with links to the FDLR who have infiltrated into Rwanda from Congo and other neighboring countries.

[72] Juvénal Habyarimana was the President of Rwanda from 1973 to 1994. On April 6, 1994, he died in a plane crash over the Rwandan capital, Kigali, which triggered the genocide. Habyarimana was from the area now known as Nyabihu district, Western Province.

[73] Human Rights Watch interview with Jeremie Sinamenye, mayor of Rubavu district, Rubavu district, July 6, 2017.

[74] Human Rights Watch interview with Jean Bosco Tuyishime, executive secretary of Nyundo sector, Rubavu district, July 6, 2017.

[75] Human Rights Watch interview with Elisaphan Ugiriribambino, executive secretary of Nyamyumba sector, Rubavu district, July 6, 2017.

[76] Human Rights Watch interview with Chantal Mukeshimana, executive secretary of Rukoko cell, Rubavu district, July 6, 2017.

[77] Human Rights Watch interview with Etienne Nirere, executive secretary of Boneza sector, Rutsiro district, July 6, 2017.

[78] Rwandan Constitution adopted in 2003, revised in 2005, 2008, 2010, and 2015, arts. 12, 13, 15 and 29, http://www.minijust.gov.rw/fileadmin/Law_and_Regulations/Official_Gazette_no_Special_of_24.12.2015__2___1_.pdf (accessed July 10, 2017).

[79] See UN Commission on Human Rights, “Report of the independent expert to update the set of principles to combat impunity,” E/CN.4/2005/102/Add.1, February 8, 2005, para. 19.

[80] International Covenant on Civil and Political Rights (ICCPR), adopted December 16, 1966, G.A Res. 2200A (XXI), 21 U.N. GAOR Supp. (No.16) at 52, U.N. A/6316 (1966), 999U.N.T.S. 171, entered into force March 23, 1976, ratified by Rwanda on April 16, 1975; African [Banjul] Charter on Human and Peoples’ Rights, adopted June 27, 1981, OAU Doc. CAB/LEG/67/3/ rev. 5, 21 I.L.M. 58 (1982), entered into force October 21, 1986, ratified by Rwanda on July 15, 1983.

[81] See Human Rights Committee, General Comment 31, Nature of the General Legal Obligation on States Parties to the Covenant, U.N. Doc. CCPR/C/21/Rev.1/Add.13 (2004), para. 15 (“States Parties must ensure that individuals also have accessible and effective remedies to vindicate those rights” protected by the ICCPR). See also Updated Set of Principles for the Protection and Promotion of Human Rights through Action to Combat Impunity (“Impunity Principles”), U.N. Doc. E/CN.4/2005/102/Add.1, February 8, 2005, adopted by the UN Commission on Human Rights in Resolution E/CN.4/2005/81, April 15, 2005, principle I; Basic Principles and Guidelines on the Right to a Remedy and Reparation for Victims of Gross Violations of International Human Rights Law and Serious Violations of International Humanitarian Law (“Reparations Principles”), adopted December 16, 2005, G.A. res. 60/147, U.N. Doc. A/RED/60/147 (2005), principle 11.

[82] ICCPR, arts. 2(2) & (3).

[83] Human Rights Committee, General Comment No. 31, Nature of the General Legal Obligation Imposed on States Parties to the Covenant, CCPR/C/21/Rev.1/Add.13, (2004), arts. 15 & 18.

[84] African Charter, arts. 1 & 7.

[85] Principles on the Effective Prevention and Investigation of Extra-legal, Arbitrary and Summary Executions: Recommended by Economic and Social Council resolution 1989/65 of 24 May 1989, E.S.C. res. 1989/65, annex, 1989 U.N. ESCOR Supp. (No. 1) at 52, U.N. Doc. E/1989/89 (1989), http://www.ohchr.org/EN/ProfessionalInterest/Pages/ArbitraryAndSummaryExecutions.aspx (accessed June 26, 2017), principle 15.

[86] See Prosecutor v. Delalic, International Criminal Tribunal for the former Yugoslavia (ICTY), Case No. It-96-21-T, November 16, 1998, para. 346 (Celebici). See also Rome Statute of the International Criminal Court, 2187 U.N.T.S. 90, entered into force July 1, 2002, art. 28.

[87] UN Basic Principles and Guidelines on the Right to a Remedy and Reparation for Victims of Gross Violations of International Human Rights Law and Serious Violations of International Humanitarian Law, March 21, 2006, adopted by the 60th session of the United Nations General Assembly, A/RES/60/147, paras. 11(c) and 24.

[88] UN Set of Principles for the Protection and Promotion of Human Rights Through Action to Combat Impunity, October 2, 1997, adopted by the UN Commission on Human Rights, E/CN.4/Sub.2/1997/20/Rev.1, principle 3.

[89] ICCPR, art. 2(3)(a).

[90] ICCPR, art. 2(3)(b); Basic Principles and Guidelines on the Right to a Remedy and Reparation for Victims of Gross Violations of International Human Rights Law and Serious Violations of International Humanitarian Law, March 21, 2006, adopted by the 60th session of the United Nations General Assembly, A/RES/60/147, principle II.3.(d): “The obligation to respect, ensure respect for and implement international human rights law and international humanitarian law as provided for under the respective bodies of law, includes, inter alia, the duty to: (d) Provide effective remedies to victims, including reparation, as described below.”

[91] Human Rights Committee, General Comment 29, States of Emergency (art. 4), U.N. Doc. CCPR/C/21/Rev.1/Add.11(2001), para. 14.

[92] Basic Principles on the Use of Force and Firearms by Law Enforcement Officials, Adopted by the Eight United Nations Congress on the Prevention of Crime and Treatment of Offenders, 1990, principle 9.

Posted: January 1, 1970, 12:00 am
Posted: January 1, 1970, 12:00 am
Posted: January 1, 1970, 12:00 am

Newly appointed Italian Prime Minister Paolo Gentiloni speaks before a confidence vote at the Senate in Rome, Italy December 14, 2016. 

© 2016 Reuters

After 28 years of failure, Italy has finally made torture a crime. But there’s little to celebrate.

The compromise text, finally approved on July 5 by the Chamber of Deputies after four years of tough negotiations, falls short of the bar set by European and international bodies of which Italy is a member and fails to meet international law standards.

The flaws rest with how the law defines the scope of the crime and the statute of limitations.

Diverging from the definition provided by the United Nations Convention against Torture, which Italy ratified in 1989, the text of the new law requires “multiple acts” for torture to occur – the convention, reflecting international law, affirms “any act” might be torture if it meets the gravity standard. The new law also requires that psychological trauma be “verifiable” to establish “psychological” torture. And parliament also rejected the proposal to double the length of the statute of limitations for the crime of torture, despite the need to ensure perpetrators are brought to justice for this serious crime.

The restrictive definition and short statute of limitations – in a country whose judiciary is infamous for its lengthy trials – raises the risks torture will go unpunished, as well as hinder the ability of victims to get redress. This means that Italy will continue to be in violation of its international obligations.

After the difficult approval at the Senate, the Chamber of Deputies made no changes to the law before passage, ignoring serious concerns raised by the Council of Europe’s Commissioner for Human Rights Nils Muižnieks, which echo those repeatedly expressed by several Italian nongovernmental organizations, by the first proponent of the draft, Senator Luigi Manconi, by the prosecutors of the 2001 Genoa G8 events, and by a group of victims, lawyers, and judges.

Italy has a duty to comply with its international obligations and with European Court of Human Rights’ rulings, and to guarantee torture survivors, victims, and their families an effective remedy. By doing so, it would give more credibility to its call for justice for Giulio Regeni, the Italian researcher tortured to death in Egypt more than a year ago.

Unfortunately, the approval of this text does not meet this test, nor does it satisfy the imperative to amend it so that it is fully in line with international law. Then, and only then, there will be something to celebrate.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Summary

My brother asked, “Can I have your identity? What is your force? Are you RAB, CID, DB?” They did not identify themselves. He asked several times. They did not wear any uniform and they had no legal arrest warrant. Nothing. They just said, “Come with us.” My brother said, “I am a lawyer and I need to know these things.” And then they said, “We will give you five minutes to get ready. Get ready and come with us.”

–Sister of Mir Ahmad Bin Quasem, a lawyer for Jamaat-e-Islami who has been “disappeared” since August 2016

Law enforcement forces, whether it is RAB, police, or any other one, it really doesn’t matter because they all are abiding by government orders. The policy of the present government is to arrest someone and “disappear” them. Some of the government forces are very rude and cruel. But it is the government policy that I blame.

–Father of Adnan Chowdhury, a Bangladesh Nationalist Party supporter who has been “disappeared” since December 2013

Since 2013, law enforcement authorities in Bangladesh have illegally detained scores of opposition activists and held them in secret without producing them before courts, as the law requires. In most cases, those arrested remain in custody for weeks or months before being formally arrested or released. Others however are killed in so-called armed exchanges, and many remain “disappeared.”

Bangladesh law enforcement authorities have illegally detained hundreds of people since 2013, including scores of opposition activists, and held them in secret detention. 

Bangladesh law enforcement agencies have a long history of human rights violations. The ruling Awami League party took office in January 2009 with the promise to end such abuses. However, according to Odhikar, a Dhaka-based human rights organization, Bangladesh law enforcement agencies have since disappeared over 320 people, including suspected criminals, militants, and, more recently, opposition members. Of these, 50 were later killed, and dozens remain disappeared. The rest were either released or formally produced in court as recent arrests.

Such disappearances continue, but many of the targets are now political opponents. In 2016, human rights organizations and the media documented over 90 people disappeared, of which 21 were killed. Nine remain disappeared at time of writing. In the first five months of 2017, Odhikar reported an additional 48 disappearances. In February 2017, the United Nations Working Group on Enforced or Involuntary Disappearances called on the Bangladesh government to halt the increasing number of enforced disappearances. In April 2017, Swedish Radio reported on a secretly recorded interview with a senior officer in the Rapid Action Battalion (RAB), a counterterror unit of police and military, who admitted that the force routinely picks up people, kills them, and disposes of the bodies.

The Awami League has taken contradictory approaches to allegations of disappearances. In November 2016, confronted with cases of enforced disappearances mostly involving political opponents, Home Minister Asaduzzaman Khan Kamal told Voice of America the allegations were baseless; those missing, he said, were hiding “to embarrass the government globally.” In March 2017, Law Minister Anisul Huq however acknowledged to the UN Human Rights Committee that disappearances had taken place, but claimed their numbers had been brought down to “a very low level.” Huq also said that Bangladeshi law did not recognize enforced disappearances, but “kidnapping or abductions” in the country’s “criminal environment” had been successfully investigated, and that the government had a “zero tolerance approach” toward law enforcement agencies committing crimes. “Nobody is above the law, nobody,” he said.

This report examines dozens of disappearances since the beginning of 2016, as well as the abduction of 22 activists from the opposition Bangladesh Nationalist Party (BNP) between November 28 and December 11, 2013, just weeks before national elections in January 2014. Nineteen of those abducted in 2013 remain disappeared at time of writing. The report finds that state law enforcement agencies—particularly RAB and the Detective Branch (DB) of the police—have been involved in secret detentions and killings, despite public assertions to the contrary.

Among those picked up in 2016 whose whereabouts remain unknown are Mir Ahmad Bin Quasem and Amaan Azmi, sons of two prominent Jamaat-e-Islami opposition leaders convicted in recent trials for war crimes during Bangladesh’s independence campaign in 1971. In addition, 12 of the men killed following an illegal detention in 2016 were known activists of the opposition Jamaat.

For instance, Shahid Al Mahmud, a 24-year-old Jamaat-e-Islami activist, was picked up in front of family members on June 13, 2016. His father, Rajab Ali, described the arrest at a press conference five days later, and said he was worried that his son might be killed. On July 1, the family heard reports of two men killed in a gunfight. Aware of other cases of faked armed encounters, they went to the morgue and discovered Shahid’s body. Police claimed that they had opened fire after coming under attack by criminals. Rajab Ali told Human Rights Watch that the police were lying: “The police abducted my son and staged a gunfight drama to justify the killing.”

The 19 disappearance cases detailed in this report from 2013 all involve the BNP. The men were picked up in eight separate incidents after the BNP and its ally, Jamaat-e-Islami, launched violent protests involving arson and the use of crude bombs. Witness accounts indicate that RAB participated in at least three incidents in different parts of Dhaka in which eight BNP supporters were disappeared. In two other incidents involving the abduction of six men, witness accounts—including a sighting of the disappeared being escorted by a man with “DB” written on his vest, and another of the disappeared in a DB office—indicate the involvement of DB police officers.

Families of the disappeared have made repeated appeals to the government, visited DB and RAB offices, and sought police investigations. Some have filed cases before the UN Working Group on Enforced or Involuntary Disappearances, while others have sought assistance from the National Human Rights Commission (NHRC), or filed habeas corpus petitions before the High Court.

Lack of Accountability

In almost all cases of enforced disappearances that Human Rights Watch documented, police did not allow the families to file a General Diary (GD)—the simplest way to report a crime or incident to the police—if the complaint contained an allegation that law enforcement authorities were involved. Police either allowed the families only to file a GD stating that the person was “kidnapped” by unidentified men, or more commonly to file a complaint saying that their family member was “missing.”

Other than in a couple of cases, the allegations of the families and witnesses have been totally ignored, and there has been no police inquiry. In a few cases where investigations have occurred, the inquiry has been cursory, without any attempt to interview eyewitnesses.

Families had varying experiences with RAB and DB. One desperate father whose son has been missing since 2013 told Human Rights Watch:

Almost every day I visited the RAB or DB office. RAB guards treated me badly and asked me not to visit regularly. They scolded me and asked me, “Why are you disturbing us again and again.” I spent two months in this way.

On the other hand, the family members of Sajedul Islam Sumon, a well-known local BNP leader who was picked up in December 2013, had political connections that enabled them to contact senior RAB officers. The officers informally admitted that RAB had picked up Sumon and five other men. One former senior RAB-1 officer told the family that the men were brought into his custody immediately after being picked up, but were then removed by other RAB officials, and that he now assumed they had all been killed.

The NHRC and courts have been ineffective in dealing with these cases. The commission has not undertaken any investigations of its own. In one case in which the NHRC did intervene on behalf of a family, it was easily brushed off with vague reassurances.

Very few families of those who have been disappeared seek legal remedy. Several told Human Rights Watch they feared legal action would seriously jeopardize the safety of their relatives—most families hope that they will be released after a period of secret, illegal detention. Others said the courts were ineffective as state agencies deny their role.

Protecting Rights

Bangladesh faces serious security challenges. In addition to concern of renewed violent protests by political opponents, authorities are grappling with a surge in attacks by Islamic militants targeting foreigners, religious minorities, writers, bloggers, editors, and gay rights activists that between 2013 and 2016 killed over 50 people.

However, the state has a responsibility to ensure that the law enforcement response does not violate human rights. Enforced disappearances are prohibited under both international human rights law and international humanitarian law. Instead of accepting denials, the courts—if not the government—should order prompt, impartial, and independent investigations, and require that law enforcement authorities either release the missing persons, or provide answers to families about what happened and prosecute those responsible for the abuses.

The government should also invite the Office of the High Commissioner for Human Rights and UN special rapporteurs to investigate serious human rights violations including disappearances, extrajudicial executions, and “kneecappings” and other alleged acts of torture, and make appropriate recommendations to ensure justice, accountability, and security force reform.

Key Recommendations

  • Promptly investigate existing allegations of enforced disappearances, locate and release those held secretly by security forces, and prosecute the perpetrators. These should include politically motivated cases involving the disappearances of members or supporters of the opposition Bangladesh Nationalist Party and the Jamaat-e-Islami party.
  • Investigate allegations of deaths of individuals in so-called crossfire or gunfights after they were already in security force custody, establish command responsibility, and prosecute those responsible.
  • Make strong and repeated public statements at the highest government levels that make clear that all law enforcement authorities and investigation agencies should comply with the law and that all detained people must be brought to court within 24 hours.
  • Immediately suspend, pending a full investigation, and remove from RAB, DB, and other law enforcement units or other position any individual for whom there exists credible evidence that they participated in an enforced disappearance. Work to disband RAB, which has been responsible for numerous and serious human rights violations, and replace with a non-military counterterrorism unit.
  • Ensure serious and independent investigations by inviting the Office of the High Commissioner for Human Rights and relevant UN special procedures—including the Working Group on Enforced or Involuntary Disappearances, the special rapporteur on extrajudicial, summary or arbitrary executions, and the special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment—to visit Bangladesh to investigate and make appropriate recommendations to ensure justice and accountability, as well as reform of the security forces to act independently and professionally.

Methodology

This report has been researched and written by a consultant for Human Rights Watch.

It provides details of some of the over 90 reported disappearances that took place during 2016. Most of the interviews that form the basis of this part of the research were done by phone, with some additional interviews in person.

It also details 19 disappearances at the end of 2013. It uses material based on initial interviews from August to December 2014 by two journalists who worked at the time at the Bangladesh national newspaper New Age. On the first anniversary of the disappearances, the paper published a series of 10 articles.[1] As a consultant with Human Rights Watch, one of the journalists conducted further research from May to August 2016 to obtain new and updated information. The interviews took place primarily in Dhaka, but also with eyewitnesses who have since moved out of the city.

In some cases, names of interviewees have been withheld to reduce the likelihood of reprisals. Over 100 people, including family members and witnesses, were interviewed to document these cases. Interviews were conducted in Bengali and English.

Bangladeshi authorities did not respond to letters that Human Rights Watch submitted in April 2017 requesting information about the specific cases documented in this report. For information on the authorities’ versions of the cases, we therefore have relied on news accounts giving details of their responses, where such accounts are available.

I. Background

Bangladesh has a long history of human rights violations and lack of accountability for security forces.[2] However, the disappearance of 19 Dhaka-based opposition activists over a two-week period at the end of 2013 appears exceptional. The only comparable abuse was at the end of the country’s independence war in December 1971, when Pakistan military, aided by local extremists, abducted and killed 17 academics and journalists in Dhaka over a four-day period.[3]

While extrajudicial killings, or deaths in so-called crossfire incidents, have persisted for years, the Awami League committed to end these abuses after it came to power in January 2009. However, over 320 people been “disappeared” by Bangladesh law enforcement agencies for various amounts of time since the government led by Prime Minister Sheikh Hasina Wazed took office, as reported by the nongovernmental organization Odhikar. Since 2013, in a new phenomenon in Bangladesh, many of those targeted have been members of the political opposition.

Many of those disappeared have not returned or were mysteriously killed, often in alleged gunfights.[4] In 2016, there were confirmed reports of at least 90 disappearances.[5] Odhikar has reported 48 cases from January to May 2017. The total number is likely to be higher, as families or witnesses do not always report disappearances.

Political Background

The Awami League won an overwhelming majority of seats in the new parliament in the December 29, 2008 elections. Bangladesh has a deeply fractured political climate, and for the next five years, the main opposition parties—the Bangladesh Nationalist Party (BNP) and the Jamaat-e-Islami—rarely attended parliament.[6] On June 30, 2011, the government amended the constitution, removing provisions that the government would hand over power to a non-political caretaker administration three months before elections.[7] The BNP and the Jamaat demanded the provision be reintroduced before the 2014 elections to ensure free and fair polling.

The government’s refusal prompted the BNP and the Jamaat to lead an 18-party opposition alliance to organize a series of three-day hartals (national strikes) and blockades to press their demands. To enforce the strikes, many opposition party activists set fire to cars and government buildings, targeting public vehicles with crude bombs. On November 8, 2013, just after the BNP announced yet another three-day hartal, the government started to crack down on BNP leaders for alleged involvement in the violence.[8]

The opposition continued to call strikes. Related street violence and retaliation by security forces resulted in deaths and injuries. The opposition also announced a poll boycott. International diplomacy, including a visit by a senior United National official, failed to lead to an agreement. Elections took place on January 5, 2014, without the involvement of opposition candidates. Thus, more than half the seats were uncontested.[9]

Clashes between supporters of the Awami League and opposition parties started again in early 2015, on the anniversary of the controversial elections. By the end of February 2015, up to 120 people had been killed in the political violence.[10] Toward the end of March 2015, under pressure, opposition parties stopped their strikes and picketing. However, a new crackdown on the opposition then began to unfold.[11]

Attacks by Extremist Groups

In parallel to the conflict between the government and political opposition, Islamic militants have since 2013 carried out attacks that have killed over 50 people. The attacks took two different forms.

The motivation for one category of attacks, which were claimed by the Al-Qaeda-affiliated Ansar al-Islam, has been perceived insults to Islam.[12] These attacks include the hacking of Asif Mohiuddin, an outspoken atheist blogger, in January 2013;[13] the killing of secular blogger and political activist Ahmed Rajib Haider in front of his family home in Dhaka the following month;[14] the killing of blogger Avijit Roy, a US national of Bangladeshi origin, in February 2015 in a machete attack that also seriously injured his wife; and the death of seven more people in the months that followed, including two LGBT activists. Some of the targets were among the 84 people publicly named as atheists by extremist groups.[15] Many bloggers and activists have gone into hiding, fled the country, or stopped writing.

A second type of attack, claimed by ISIS (also known as the Islamic State), has targeted foreigners in Bangladesh, as well as members of religious minority groups including Buddhists, Christians, Hindus, and Shia. These began in September 2015, when unknown attackers shot and killed Italian aid worker Cesare Tavella. In the following ten months, 19 people were killed in similar attacks. On July 1, 2016, militants attacked a café in the upscale Gulshan neighborhood of Dhaka, in which 18 foreign nationals, two Bangladeshis, and two police officers died.[16] Although ISIS claimed responsibility for all these attacks, the government has denied an ISIS connection, as well as the group’s presence in Bangladesh, and instead has blamed opposition parties and a revamped version of the local Islamist group Jamaat-ul-Mujahideen Bangladesh (JMB), which police authorities term the neo-JMB.[17]

History of Disappearances and Extrajudicial Killings

One of the first well documented incidents of an apparent enforced disappearance in post-1971 Bangladesh is the case of Kalpana Chakma, an indigenous women's rights activist, who was picked up along with her two brothers from their home in the Chittagong Hill Tracts, allegedly by army officers on election day in 1996. The two brothers escaped after a few days, but Kalpana, a strong critic of the army’s role in the Chittagong Hill Tracts, remains missing, presumed dead.[18]

In 2002, the then-ruling BNP started Operation Clean Heart to tackle crime, resulting in thousands of detentions and reports of over 40 deaths, many allegedly through torture.[19] In 2004, the BNP government established RAB as an elite counterterrorism unit combining members of the armed forces and police.[20] In the first two years, Human Rights Watch identified 367 people killed by RAB in alleged “crossfire.”[21] In several cases, men were picked up by RAB, “disappeared,” and killed. RAB denied the detentions.[22]

On January 11, 2007, following violent political protests around planned elections, the military stepped in, proclaiming a state of emergency, and established a caretaker government. In November 2008, near the end of the military-backed caretaker government, the human rights organization Odhikar found that 245 people had been killed in alleged “crossfires” or “gunfights,” and 38 people had allegedly been tortured to death since January 2007.[23]

The Awami League came to power in January 2009 promising that “extrajudicial killings will be stopped.”[24] That commitment soon faltered.[25] In May 2011, a Human Rights Watch report found that since the Awami League took office, nearly 200 people had been killed in RAB operations.[26] Regardless of who has led them, governments in Bangladesh have justified extrajudicial killings as lawful self-defense.

As the Awami League’s term continued, law enforcement authorities started to increasingly target the opposition. While extrajudicial killings continued, reports of enforced disappearances, which until then were rare, increased.[27] Families and eyewitnesses have repeatedly made allegations against the Detective Branch (DB) of the police, in addition to RAB, for its alleged role in these disappearances.[28]

In a few cases, those illegally detained have been released without ever being formally arrested. For instance, in two high profile disappearances, a witness at the International Crimes Tribunal in November 2012 and a BNP spokesperson in April 2015 were picked up and secretly detained in Bangladesh for around six weeks.[29] They were then discovered in Indian territory where they were arrested by Indian authorities for illegal entry. In a more recent case, the police “released” two men at a public meeting attended by the home minister who they said had handed themselves in and turned their back on militancy, though their current whereabouts remain uncertain. In May 2017, Muhammed Iqbal Mahmud, who had been picked up in Dhaka eight months earlier, was left blindfolded on the side of the Dhaka-Raipur road.[30]

In most cases, the men remain in secret detention for weeks or months before the police suddenly claim to have arrested them the previous day. The men are then taken to the magistrate court and are remanded into police custody on the basis of a concocted story.

In other disappearances, the men’s fate is more serious—they are killed in alleged “gunfire” or their dead bodies are found. In 2016, this happened to 21 of those disappeared.[31] For some, including the 19 disappeared in 2013 detailed in this report, their whereabouts remain unknown.

As of May 2016, the UN Working Group on Enforced or Involuntary Disappearances had formally received information on 34 cases of alleged enforced disappearances in Bangladesh. In its annual report published in July 2016, the group reiterated “its regrets that no information has been received … concerning the alleged frequent use of enforced disappearance as a tool by law enforcement agencies, paramilitary and armed forces to detain and even extrajudicially execute individuals.”[32]

The Bangladesh government has also not responded to a request by the Working Group to visit Bangladesh, first sent on March 12, 2013, and resent on November 27, 2015. In February 2017, the group issued a statement, endorsed by four UN special rapporteurs, calling on the Bangladesh government to halt the increasing number of enforced disappearances and reveal the whereabouts of three sons of opposition leaders who had been abducted.[33]

In April 2014, Swedish Radio reported that it had in its possession a secretly recorded interview with a senior RAB official, which it had authenticated, describing RAB’s practice of disappearing and killing people. “Everyone is not an expert on forced disappearances. We have to make sure no clue is left behind,” the RAB official is quoted as saying.[34]

The government has failed to investigate allegations of disappearances and hold perpetrators to account. In 2014, for example, in response to questions about the 2013 disappearances detailed in this report, the state minister for home affairs, Asaduzzaman Khan, told New Age that though “one or two incidents” had happened at that time, “law men were not involved in any of those cases.”[35]

One exception to the lack of investigation occurred in Narayanganj district. Seven men, including an Awami League leader, were picked up by RAB officials in April 2014 over a dispute with a party competitor. A few days later, their bloated bodies floated to the surface of the Shitalakkya River, triggering a media storm. The High Court intervened, and the eventual investigation and prosecution resulted in the conviction in January 2017 of 35 people for murder, including three RAB officers.[36]

International and National Legal Standards

Although Bangladesh law does not contain any specific criminal offense of “enforced disappearance,” the Penal Code, 1860, contains offenses including “wrongful confinement”; “wrongful confinement in secret”; “abduction”; “kidnapping or abducting with intent secretly and wrongfully to confine person”; “kidnapping or abducting in order to subject person to grievous hurt, slavery”; and “wrongfully concealing or keeping in confinement, kidnapped or abducted person.”[37] Penalties for these offenses range from two to ten years’ imprisonment. In addition, the Torture and Custodial Death (Prohibition) Act, 2013, makes torture an offense punishable by up to five years’ imprisonment. Death by torture is punishable by a life sentence.[38]

The Bangladesh constitution also imposes obligations on the state to protect the fundamental rights of every citizen, forbidding any action that is “detrimental to the life, liberty, body, reputation or property of any person.”[39] The state is further obligated to secure the right to life and personal liberty.[40]

In early November 2016, Bangladesh’s highest court published guidelines requiring law enforcement officers to undertake a basic set of actions when arresting a person. They include an obligation to inform a close relative or friend of the arrested person about the time and place of the detention; to make clear the location where the person is being held; and to allow the arrested person access to a lawyer or relatives. Officers must prepare a memorandum of arrest to be signed by the arrested person and complete a case diary, which must be handed to a magistrate if the officer requests custody of a suspect for more than 24 hours, setting out the allegations and need for further investigation.[41]

In Bangladesh, a prosecutor must obtain a prior government “sanction” before lodging any criminal complaint against a state official, permission that is seldom granted.[42] The law allows both police officers and the Rapid Action Battalion to escape prosecution if they can show that they acted in “good faith.”[43]

Bangladesh is obliged to follow the standards set out in the 1992 UN General Assembly's Declaration on the Protection of All Persons from Enforced Disappearances (Declaration on Enforced Disappearances).[44] Although non-binding, the declaration reflects the consensus of the international community against this type of human rights violation and provides authoritative guidance as to the safeguards that must be implemented to prevent it. Bangladesh also has obligations under the International Covenant on Civil and Political Rights, which enshrines the right to life, liberty, and security, and right to a fair trial.[45]

Bangladesh is party to the Rome Statute setting up the International Criminal Court.[46] The statute includes enforced disappearances as one of the crimes against humanity over which the court has jurisdiction.[47] The statute defines “enforced disappearance of persons” as “the arrest, detention or abduction of persons by, or with the authorization, support or acquiescence of, a State or a political organization, followed by a refusal to acknowledge that deprivation of freedom or to give information on the fate or whereabouts of those persons.”[48]

Under the Rome Statute, enforced disappearances amount to a crime against humanity when committed as part of a widespread or systematic “attack on a civilian population,” such as a state policy to plan and commit such crimes.[49]

II. Ongoing Secret Detentions and Disappearances

Human rights organizations and media have documented over 90 people “disappeared” in 2016, of whom 21 were later found dead. The whereabouts of nine remain unknown at time of writing. The others, after varying periods of secret detention, were “released” before being formally arrested.

There have been additional reports of other disappearances involving people suspected of involvement in the Holey Artisan Bakery attack on July 1, 2016, or linked to the “neo-JMB,” which are not included in these numbers. For example, it was reported that alleged militants Tamim Ahmed Chowdhury and Nurul Islam Marjan were detained in state custody for significant periods of time before being killed in so-called counterterrorism operations on August 27, 2016, and January 7, 2017, respectively.[50]

Killed Following Disappearances

The 21 men picked up and killed are set out in the table below. Twelve were Jamaat-e-Islami activists, three were Awami League members, one was a BNP activist, three were allegedly involved in murders, and two were alleged to be criminals.[51] Below the table are further details on eight of the cases, based on interviews with families and witnesses.

ILLEGALY DETAINED AND KILLED IN 2016:

Name

Date of detention

Date body was found

Summary of family allegations of pick up and death

Abu Huraira, 55

January 24

February 29

Abu Huraira, a teacher at Kuthi Durgapur Madrasa and a senior member of Jamaat-e-Islami in Jhenaidah, was picked up outside the school where he taught by men who identified themselves as DB members. His body was found a month later on the Jessore-Jhenaidah road.[52]

Mohammad Jasim Uddin, 23

February 12

March 2

Mohammad Jasim Uddin, a student at Jhenaidah Alia Madrasa and a leader of the Jamaat-e-Islami student wing, was picked up in Dhaka by some men in plainclothes claiming to be police. His body was found in a field 20 days later bearing torture marks.

Mukul Rana (Sharif alias Saleh alias Arif)

February 23

June 19

Mukul Rana, accused of involvement in the killing of blogger Avijit Roy, was picked up and put in a microbus from Bashundia intersection in Jessore by men who self-identified as police. Four months later, police said his body was recovered after a gunfight.[53]

Abu Jar Gifari, 21

Shamim Mahmud, 23

March 18

March 25

April 13

Abu Jar Gifari, a Jamaat-e-Islami student leader in Jhenaidah, was picked up as he left the mosque after Friday prayers by four armed men in plainclothes, who identified themselves as police. Shamim Mahmud, also a Jamaat-e-Islami student activist, was picked up outside a grocery store by men claiming to be police. Nearly three weeks later, their bodies were recovered, allegedly with bullet wounds, near the cremation ground in Jessore Sadar Upazila.

Sohanur Rahman, 16

April 10

April 20

Sohanur Rahman, a supporter of the Jamaat-e-Islami, was arrested in Ishwarba village in Jhenaidah, in front of his younger brother. His body, with bullet injuries, was found 10 days later.

Shahid Al Mahmud, 24

Anisur Rahman, 26

June 13

June 16

July 1

Shahid Al Mahmud, a cattle farmer and Jamaat-e-Islami student activist, was picked up early in the morning from his house in Jhenaidah in front of his parents and taken away in a microbus. Anisur Rahman, also a student activist, was picked up three days later from a hostel in Dhaka.[54] Their bodies were recovered two weeks later. Police claimed they were killed during a gunfight with criminals at the Tatultala-Naldanga road in Jhenaidah.[55]

Ibnul Islam Parvez, 27

June 16

July 2

Ibnul Islam Parvez, former president of the Jhenaidah district town unit Jamaat student wing, was picked up from a hostel in Dhaka (along with Anisur Rahman, see above). Two weeks later, the police said that Parvez’s body was found in Aruakandi village following a gunfight.[56]

Nurun Nabi, 28

Nurul Islam Rashed, 27

June 23

July 5

Nurun Nabi and Nurul Islam Rashed, suspected of involvement in the killing of a police officer’s wife, were picked up by police from a house in the Millitarir Pool area in Chittagong where they were staying. Two weeks later, the police stated that their bodies were found following a gunfight at MBW Brick field close to the city.[57]

Saiful Islam, 25

July 1

July 19

Saiful Islam, an activist of the Jamaat-e-Islami student wing, was picked up by police from his hostel in Jhenaidah along with four other students, and was seen the following day by his family at a police station. Nearly three weeks later, police claimed to have found his body close to Jhenaidah highway following a gunfight with criminals.

Faruk
Hossain, 42

July 1

July 2

Faruk Hossain, claimed by police to be a member of a gang of robbers, was picked up in Jessore by four men on two motorbikes identifying themselves as police officers. Police later said his body was found following a gunfight.[58]

Oliullah
Molla,
38

July 9

July 10

Oliullah Mollah, vice president of a local brick field workers’ association and general secretary of his local unit of the Bangladesh Nationalist Party in Satkhira, was picked up by police from the Paruli bazaar area. Police later said his body was found in Ganghati village following a gunfight.

Idris Ali, 56

August 4

August 12

Idris Ali, a madrasa teacher and Jamaat-e-Islami leader in Jhenaidah, was picked up by police while returning to his house at night. Eight days later, his body was found on the Harinakundu-Jhenaidah road with marks of torture.

Mohammad Zahurul
Islam, 42

September 7

October 25

Mohammad Zahurul Islam, president of the Jhenaidah town unit of Jamaat-e-Islami and a lecturer at Keyarbazar College, was picked up on his way home for lunch in the Al Hera area by men claiming to be DB members. A month later, police said he was shot dead on the Jhenaidah town bypass road when they opened fire in self- defense.[59]

Tarique Hassan Shajib, 40

September 13

October 25

Tarique Hassan Shajib, member of Jamaat-e-Islami, was picked up just after midnight by men claiming to be police from Al Hera school in Jhenaidah town where the party often held meetings. His body was found on October 25 with that of Zahurul Islam, whose case is described above.[60]

Safinul Islam (alias Safin), 32

September 27

October 26

Safinul Islam, previously convicted in a murder case, was picked up from Dhaka by men identifiable as members of RAB. RAB denied the arrest that time, but a month later, claimed that he was killed in a gunfight at Dadrajonti village in Joypurhat.[61]

Redwan Sabbir

Abu Abdullah

Sohel Rana

December 3

December 5

Redwan Sabbir, Abu Abdullah, and Sohel Rana, three Awami League youth wing activists, were picked up by a group of about 12 men, some wearing vests inscribed with “RAB,” from a tea stall in Tokia Bazar in Natore, late at night. Their bodies, with bullet wounds, were found two days later in Dinajpur.[62]

Mohammad Jasim Uddin

Mohammad Jasim Uddin, a student at Jhenaidah Alia Madrasa, was acting president of the Jamaat-e-Islami student wing in Ganna union unit in Jhenaidah district. According to his relatives, he no longer lived at his home in the Kalohati area of Jhenaidah town, fearing arrest. However, as his mother was sick, in February 2016 he decided to visit her. He was picked up soon after. His father, Khalil Rahman, said:

We had a conversation over the phone on February 11 when he reached Dhaka. He told me that he will come to Jhenaidah the next day, but would not stay long. But then we heard from a friend of Jasim’s that he had been taken away by some men who claimed that they were police.[63]

Soon after Jasim went missing, his older brother, Saifur Rahman, went to the Rajbari police station and local RAB offices, but they denied the arrest. On March 4, his family members were informed that a mutilated body had been found at Mostabapur field in Harinakundu Upazila. His brother identified his body. Jasim had been shot in the head, and his hands and legs were tied.[64] His mother said the family did not receive a postmortem report.[65]

Abu Jar Gifari

Abu Jar Gifari, a third-year student at the Jessore MM College, was president of the local Jamaat-e-Islami student wing in Jhenaidah. Citing witnesses, Abu’s father, Nur Islam, said that on March 18, 2016, his son was picked up by four armed men who identified themselves as DB members:

The men approached my son on two motorbikes as he came out of the mosque after attending juma prayer. They handcuffed him after he gave his name and dragged him onto a motorbike at gunpoint. Some local people tried to stop this happening but the men aimed their guns at the local people and told people to not to interfere with them as they were performing their “administrative duty.”[66]

Later that afternoon, Nur Islam went to the Kaliganj police station where officers denied having carried out any such operation.[67]

Family members also met RAB officials who claimed to have no information regarding Abu’s whereabouts. “We were terrified and requested officials of law enforcement agencies not kill him in ‘crossfire.’ They however insisted that they did not pick him up,” his father said.

On the morning of April 13, the family was informed that two bodies had been found near the cremation ground in Jessore Sadar Upazila.[68] His father said:

We rushed there and witnessed the most heartbreaking scene. My son’s body was left there with another youth’s body. Both had bullet wounds and marks of torture.[69]

The other body was that of Shamim Mahmud.

Shamim Mahmud

Shamim Mahmud, 23, a second-year student at KC College in Jhenaidah and an activist of the Jamaat-e-Islami student wing, was detained on March 24, 2016. His father, Ruhul Amin, a madrasa teacher, said eyewitnesses told him that his son was sitting at a grocery store reading a newspaper in the afternoon when four men in plainclothes entered and picked him up at gunpoint. Ruhul Amin said:

When local people tried to rescue Shamim, the men said that they were police and threatened to open fire if anyone tried to stop their “operation.” Shamim was forcibly put on a motorbike. As the police motorbike went a few meters, Shamim tried to jump off. He was injured and the police still beat him. They took him away unconscious.[70]

Family members went to the Kaliganj police station but officials did not allow them to lodge a GD, and denied that they were involved in picking up Shamim. Instead, they criticized the father for allowing his son to be involved in Jamaat politics. Family members searched for Shamim at the local RAB-6 office and other police stations with no luck. They also approached a local member of parliament. However, no one could provide information about Shamim’s whereabouts.

Three weeks later, on April 13, Shamim’s body was found along with that of Abu Jar Gifari near the cremation ground in Jessore. The family said that the body had bullet wounds and signs of torture.[71]

Sohanur Rahman

Sohanur Rahman, 16, a high school student in Jhenaidah and a supporter of the Jamaat-e-Islami, was picked up from Ishwarba village on April 10, 2016. Sohanur and his brother, Masud, were waiting for their mother to return from Dhaka when Sohanur was detained, according to their father Mohsin Ali. Mohsin said:

My younger son Masud said that at about 5:30 p.m., four people on “easy-bikes” [a three wheeled, battery powered vehicle] passed them but returned after some local people pointed them out. One man asked Sohanur his name and when he gave it to them, two people grabbed his shirt collar and dragged him to one of the easy-bikes. Local people rushed over to them and tried to stop the men from taking Sohanur away, but the men on bikes showed their weapons and introduced themselves as plainclothes police officers. Masud cried and requested the police not take his brother away. They told him that they were taking Sohanur to Kaliganj police station.[72]

Locals identified two of the men as sub-inspectors from the Kaliganj police station. The next day, family members went to the police station. Police denied they had arrested Sohanur and did not initially allow the family members to file a GD, though they later allowed it.[73]

Sohanur’s family members also met with their local Awami League lawmaker, the Jhenaidah police superintendent, and the local RAB commander, but no one provided any information on Sohanur’s whereabouts. On April 20, Sohanur’s body was found in Kharagoda village, about 17 kilometers from their house.[74] His family said that his body showed signs of bullet injuries to the head. His father said that they asked for a copy of the postmortem report, but the police refused to provide one.[75]

Shahid Al Mahmud

Shahid Al Mahmud, 24, was a cattle farmer and activist of the Jamaat-e-Islami student wing. He lived with his parents in Badanpur village in Jhenaidah district. He was detained on June 13, 2016. His father, Rajab Ali, said the family was asleep when the police came:

Just after midnight, two men broke down the bamboo boundary, entered the compound of our house, and called out Shahid’s name as though they were his political associates. My wife and I woke up and went out to the gate, and one of the two men, both dressed in civilian clothes, pulled out a gun and threatened us. I opened the door and men went and pulled Shahid from his room. They allowed him to change his clothes. He was dragged outside and taken into a black microbus. There were other men present, some wearing police uniforms.[76]

Shakib Al Hassan, who was staying at a neighboring house, said he saw his cousin Shahid being put into the microbus. The human rights group Odhikar interviewed a neighbor, Khabir Uddin, who said he recognized one of the arresting officers.[77]

Abdur Rahim, Shahid’s older brother, who lives in Jhenaidah town, said he rushed to the police station after he heard about the arrest, but police denied having any knowledge about it.[78] Later that day he went to other police stations, the local RAB-6, and DB offices, but they all denied any knowledge of the detention.

The following day, June 15, Abdur attempted to file a GD laying out what had happened to his brother and mentioning the police and name of the officer who witnesses claimed was present. He was refused:

The police refused to accept the GD saying that I cannot accuse plainclothes police officers of involvement and that I should fill in a “missing person” GD. I left the police station without filing anything.[79]

On June 18, the family held a press conference at Jhenaidah Press Club where they described Shahid’s detention.[80] On July 1, the family heard reports of two men killed in a “crossfire” incident. Aware of other cases of such faked armed encounters, they went to the morgue and discovered Shahid’s body.

The police claimed that a team was patrolling Tatultala-Naldanga road in the early morning on July 1, when at about 3:30 a.m. some criminals hurled several bombs at the police vehicle.[81] The police returned fire. After a 20-minute gun battle, two dead bodies were found, one of whom was Shahid. The police claimed to have recovered a firearm, two bullets, five sharp weapons, and five crude bombs from the spot. They also said that some officers were wounded. Shahid’s father said the police are lying. “The police abducted my son and staged a ‘gunfight’ drama to justify the killing.”[82]

Saiful Islam

Saiful Islam, 25, was a student in the Arabic Literature Department at the Islamic University in Kushtia and an activist of the Jamaat-e-Islami student wing. He lived in a private hostel along with other party activists. Saiful’s brother, Abdullah Al Azad, said that in the early morning of July 2, he received a telephone call from Saiful’s brother-in-law.

He said that Saiful had called him and told him that he had been arrested and taken to Jhenaidah Sadar police station, and that the police said he will be released if his father and the ward chairman went to the police station.[83]

Luftur Islam, Saiful’s father, said he immediately went to meet the local ward chairman to request his intervention. The chairman told them to go and speak to the police, promising to put in a word. Lutfur, along with a neighbor, Topon, went to the city police station. Saiful’s father said that they saw Saiful in one of the cells: “We saw Saiful and some other students in police custody. My son insisted that police would release him if the chairman requested them to do so.”[84]

The police agreed that Lutfur could go outside the police station and buy some breakfast for his son. But when he returned, Saiful was gone.

When I returned to the police station, the cell where my son had been was empty. The police denied that they had arrested anyone named Saiful. When I insisted that I had seen him a few moments earlier, they said that I must have been mistaken and it was illusion.[85]

Four other students that had been picked up that morning were released in the afternoon. They told Saiful’s family members that five of them, including Saiful, had been detained together and brought to the local police station. They did not know what happened to Saiful after they were released.

Fulhari Union Chairman Jamilur Rahman Bipul said that a police officer had called him and asked about Saiful. “I told the police officer that Saiful was a good person and was not involved with any criminal activities in localities. The policeman replied that Saiful was a Shibir activist in the town and the university area.”[86]

In subsequent days, Saiful’s father went to the RAB and DB offices, but they all denied any knowledge of the arrest. On the morning of July 19, Saiful’s family read on the Ekushey TV crawl that a person had been killed in a “gunfight” beside a graveyard in Ariakandi village. Worried, they went to the morgue, where they found Saiful’s body.

The police claimed that at about 3 a.m., a police team was patrolling the Dhaka-Jhenaidah highway near Madhupur-Aruakandi graveyard when some criminals hurled crude bombs at the police vehicle. The law enforcers returned fire, triggering the “gunfight,” and one of the criminals was shot by police. Others managed to flee, police said.[87]

Oliullah Molla

Oliullah Molla, 38, general secretary of his local unit of BNP, was detained by police from the Paruli bazaar area in Satkhira on July 9, 2016.[88] When his relatives went to the local Shyamnagar police station, they said that the police confirmed the arrest but refused to let them to meet Oliullah. The family also said that local Awami League leaders demanded bribes to ensure his safety. His wife said the family began to fear for his safety:

At about 3:30 a.m. the following morning, I heard sounds of gunshots from a nearby area. I become frightened wondering whether Oliullah had been shot. My fear was proven right as in the morning I was informed about the murder of my husband.[89]

Sohidullah, Oliullah’s brother, said that family members went to the hospital morgue and found that Oliullah had been shot in the head. They also saw that his right eye was out of its socket and his right hand was cut. Police, however, claimed that they were on duty in Ganghati village when at about 3:30 a.m. a group of men sped down the road on motorbikes. The police tried to stop them, but the men instead hurled bombs and opened fire on the police, resulting in a gunfight during which Oliullah was killed.[90]

Idris Ali

Idris Ali, 56, a teacher at the Hossain Ali Aleem Madrasa at Harinakundu Upazila in the Jhenaidah, was a local Jamaat-e-Islami leader. At about 8 p.m. on August 4, 2016, Idris was on his motorbike returning to his house from the market when, according to witnesses, some plainclothes people from a police post stopped him and forcibly dragged him away.[91]

Family members went to their local police station after witnesses told them about the incident. But the officer-in-charge told them that the location where Idris was allegedly taken was not within the station’s jurisdiction, and that they should go to the Shailkupa police station to file a GD. Officers there, however, declined to allow them to do so.

Idris’s wife held a press conference on August 9 describing the disappearance. On the morning of August 12, the family was informed that the body of a missing madrasa teacher was found on the Harinakundu-Jhenaidah road. A family member said they went to the morgue:

We went there and found his mutilated body. After conducting autopsy and postmortem examinations, police claimed that it was a case of a road mishap, and Idris’s motorcycle was found at the roadside. We, however, identified marks of severe torture on different parts of the body. There were marks of hammering behind the head. Tendons were slashed. All the parts of the body bore torture marks.[92]

Police claimed that Idris Ali was wanted in several criminal cases, including for the murder of a police officer.[93]

Continuing Disappearances

Cases of nine men who were picked up in 2016 and remain disappeared at time of writing are set out in the table below.[94] Some of these people, by the time of publication, may have been released or killed. Below the table are further details of five of the cases, based on interviews with families and witnesses.

DISAPPEARED IN 2016, WHERABOUTS REMAIN UNKNOWN:

Name

Pick up date

Summary

Moazzem Hossain Tapu, 28

January 26

Moazzem Hossain Tapu, an Awami League student wing activist, was picked up from an apartment in Bashundhara Residential Area in Dhaka belonging to a political rival from the same party. The men who picked him up introduced themselves to the building guard as law enforcement officials.

Bivas Sangma, 25

Probhat Marak, 50

Rajesh Marak, 22

April 14

At around 4 a.m. on April 14, about 12 men, some wearing black clothes inscribed with “RAB,” came to Gozni village in Sherpur and picked up Bivas Sangma, a student at Tinani Adarsha Degree College, and Probhat Marak, a day laborer, from their homes. The same day, Probhat’s son, Rajesh Marak, a student at a private university in Dhaka, was picked up near Bhaluka College in Mymensingh.[95]

Kamrul Islam Sikdar Musa

June 22

Law enforcement officials picked up Kamrul Islam Sikdrar Musa as he approached the house of a friend in the Kathgar area of Chittagong where his wife and children were staying. Police have said that Musa is suspected of killing a senior police official, though they deny picking him up.[96]

Yasin Mohammad Abdus Samad Talukder, 35

July 14

Yasin Mohammad, alleged by police to have been involved in Islamic militancy, was picked up by law enforcement officers from his parked car at the Kakoli bus stand in Dhaka.

Mir Ahmad Bin Quasem, 32

August 9

Mir Ahmad Bin Quasem, the son of an opposition politician, was picked up by law enforcement officers late at night from his home in Dhaka.

Amaan Azmi, 57

August 22

Amaan Azmi, the son of an opposition politician, was picked up by law enforcement officers from his home in Mogh Bazaar, Dhaka, in the evening.

Sheikh Mohammad Lotiful Khabir (alias Anowar Hossain), 45

November 10

Plainclothes dressed men, introducing themselves as from the “administration,” picked up Anowar Hossain, a homeopathic doctor, from his clinic next to his house in Boalia, Rajshai.

Yasin Talukder

Yasin Mohammad Abdus Samad Talukder, 35, a physics teacher, lived in Dhaka in an apartment with his mother. A Bangladeshi national with dual British citizenship, Yasin went to school in Bangladesh, moved to the United Kingdom in 2001 for higher studies, and returned to Dhaka four years later after suffering an assault. His family has acknowledged that in 2011, British government intelligence officers asked him to attend a number of counterterrorism interviews at the British High Commission due to concerns about his alleged involvement in militancy, and that Yasin allowed the officers access to his computer.[97] According to his family, the intelligence officers concluded he was no threat. The British High Commission declined to respond to questions related to Yasin’s background stating that “it cannot discuss individual consular cases.”[98]

On July 12, two days before Yasin was picked up, a national paper in Bangladesh published an article stating that Yasin was among the suspects listed in an FIR, filed five months earlier, for conspiring to attack private buildings.[99] Yasin’s family question the authenticity of the allegation.

On the morning of July 14, 2016, Yasin had arranged to meet his cousin Sidrat near the Kakoli bus stand so they could drive together to attend a wedding.[100] At about 11:40 a.m., Yasin called his cousin to find out where he was. Sidrat said he was 10 minutes away. Soon after, Sidrat received another phone call from Yasin. He said:

I could hear other people shouting. The conversations and shouting was not clear and Yasin was not responding to me. The call went on for three minutes and then the phone disconnected suddenly. When I called again, it was switched off. When I reached the bus stand, I found the car parked in the spot Yasin bhai told me it would be. When I saw he wasn't inside, I started to worry. I walked up and down, looking for my cousin. I then walked to the nearest ticket stall and asked the ticket seller if he knew where the driver of the car was. I asked loud enough hoping that people sitting nearby might volunteer information, but no one did. The ticket seller initially responded with a “don't know, he's probably around somewhere nearby,” but his demeanor pretty much confirmed my suspicion that something bad had happened. I walked to some further stalls and asked, but no one said anything. But I felt the initial ticket seller knew something. I went back to him and this time pressured him a bit more. Eventually he mentioned that a black microbus had parked beside the car and that some people had walked over to the car, and then the driver of the car [my cousin] got out and went with them to the microbus.[101]

Sidrat said he kept trying Yasin’s phone and then called Yasin’s mother and uncle. A police officer stationed at the local police post advised the family to go to Banani police station to file a GD. Yasin’s mother said that while the Banani police station refused to accept the complaint, she was able to lodge a GD at the Bashantec police station where she lives.[102] Yasin’s mother also informed the British High Commission about what had happened to her son, and was advised to instruct a lawyer.

Two days after the incident, a man who gave his name as Sarwar Jahan and claimed to be from the Police Bureau of Investigation came to the apartment where Yasin and his mother lived. Yasin’s mother described the visit:

He asked me all kinds of questions but when I asked him, he did not say anything about my son being detained. I noticed however that the officer had a copy of my son’s biometric mobile phone re-registration form.[103]

Then on the night of July 21, seven days after Yasin was picked up, men from RAB came to the house.

They introduced themselves as Major Nahid and Major Masud. There were also other men with them. They took all my son’s electronic equipment including his computers away with them. They did not give me any receipt.[104]

The British High Commission has confirmed that Yasin was “detained in July 2016,” and that the Foreign Office was “continuing to press the Bangladesh authorities for consular access.”[105] However, the authorities deny that they have Yasin in custody.

Moazzem Hossain Tapu

Moazzem Hossain Tapu, 28, was a former president of the Rampura unit of the Chhatra League, the student wing of the Awami League, and was aspiring to be appointed to a higher political post.

In November 2015, as a result of a clash in Rampura between the local Awami League members, Tapu went into hiding in his home village in Faridganj, Chandpur district.[106] Two months later, on January 26, his mother, Saleha Begum, said that her son called her to say that he was back in Dhaka. He left Faridganj at about 8 a.m.

Tapu suddenly told me over the phone that he had reached Dhaka as his friends Imon and Tajul had arranged a meeting with members of the Jubo League to reach a mutual understanding and end old rivalries.[107]

Later that night Tapu’s brother, Moinul Hossain Opu, said that Imon phoned him to say that Tapu had been picked up from an apartment in Bashundhara Residential Area under Vatara police station. Moinul said:

We went to the apartment immediately. One of the guards there told us that three people in plainclothes went to the apartment and picked up my brother around midnight. When the guard tried to stop them, they introduced themselves as members of DB.[108]

The family went to the Vatara police station to inquire about his whereabouts.[109] The sub-inspector on duty told them he had no information about Tapu, and they should inquire with the DB or RAB offices. On January 28, the family attempted to file a GD at the station, but the officers would not initially accept it, and asked the family to consult the DB or RAB.

On January 30, the family filed the GD. They followed up two days later, on February 1, filing a First Information Report (FIR) at the police station. They said they did so at the suggestion of the home minister, whom they met regarding Tapu’s disappearance. Since several family members hold leadership positions in the Awami League, they have a relationship with the minister, they explained, and met him more than 20 times regarding the case. They added that he made several calls to different law enforcement agencies, including the DB, RAB, and Inspector General’s Office on Tapu’s behalf.

Based on information provided by the home minister, Tapu’s family thinks that Tapu’s friends and some Jubo League leaders were behind the disappearance, and they have filed an FIR alleging their involvement. They believe Jubo League leaders bribed an RAB unit to apprehend and detain Tapu, though they did not name police or RAB officers in their complaint.

The case is now being investigated by DB. The family has organized several press conferences seeking information, and complained about threats and demands for bribes.[110] His mother Saleha Begum said: “We’ve never received an official acknowledgement that he is in custody. We don’t know where he is being held. At least if there was a body, we would know what happened. We don’t know if he’s dead or alive.”[111]

Kamrul Islam Sikdar Musa

Kamrul Islam Sikdar Musa, a sand trader who also allegedly worked as a police informant, was suspected of involvement in the Chittagong murder of the wife of a senior counterterrorism officer.[112] On June 22, 2016, he was picked up in the Kathghar area of Chittagong as he approached a house where he thought it was safe to meet his wife and children, as arranged by a friend, but which in fact had been identified by the police. His wife, Panna Akhter, said:

I and my two children were surrounded by a police woman and seven or eight policemen in one of the three rooms of the apartment while my brother-in-law [Musa’s brother] was kept separate in a second room. My brother-in-law had earlier been picked up and brought that morning by the police to the house.… One of the police officials then went out of the house, and after some time sent a message over police wireless which said that Musa is arrested. When we heard the words, I started crying. I repeatedly asked the police personnel why they have arrested my husband, and they responded by saying, “Don’t you read the newspapers. Do not you see what’s going on.” I told them that I read many things but I want to know what was exact reason behind his arrest. Then the police said, “Do not worry, he will be released.”[113]

Panna said that police have refused a GD and denied the arrest, and that authorities have threatened her since her husband’s detention for being vocal about what happened to him.[114] In early October, police announced a 500,000 taka (US$6,200) reward for information leading to his arrest.[115] Musa’s wife called the reward a “farce” since he was picked up in June.[116]

Mir Ahmad Bin Quasem

Mir Ahmad Bin Quasem, 32, is the son of Mir Quasem Ali, a prominent leader of the opposition Jamaat-e-Islami party who was convicted of war crimes in November 2014 and was facing execution when his son was picked up. Mir Ahmad is a Supreme Court lawyer who was involved in the legal team representing several men prosecuted by the International Crimes Tribunal, including his father. He was picked up from his house late on August 9, 2016, in the presence of his wife and sister, Tahera Tasnim, who said seven or eight men in civilian clothes came to the door around 11 p.m.:

He asked his wife to open the door and told us to behave normally. I was in the kitchen at this point. When the door was opened, the men asked my sister-in-law, “Where is your husband?” My brother then went to the door and the men said, “You have to come with us.” My brother asked, “Can I have your identity? What is your force? Are you RAB, CID, DB?” They did not identify themselves. He asked several times. They did not wear any uniform and they had no legal arrest warrant. Nothing. They just said, “Come with us.” My brother said, “I am a lawyer and I need to know these things.” And then they said, “We will give you five minutes to get ready. Get ready and come with us.” I said, “You cannot take my brother like this without any identity, in the dead of night. Come in the morning and take him.” I stood in front of my brother and held the hand of one of the men. The man pulled away my hand and grabbed my brother. We were running behind him. It was total confusion. There was a white microbus and he was put in it. And the vehicle drove away.[117]

The following day, his wife filed a GD in Pallabi Thana but police refused to allow them to describe the men who took Mir Ahmad as law enforcement officials, and instead required them to describe them simply as “civil-dressed” men. On December 22, 2016, she filed an FIR with the same police station.[118]

Mir Ahmad’s father, Quasem Ali, was hanged in September. Mir Ahmad was not able to meet his father before the execution or attend his father’s funeral.

In the weeks before his arrest, Mir Ahmad had told Human Rights Watch that he was worried that he might be arrested or disappeared. According to his family, a few days before he was picked up, on the same day that Humam Quader Chowdhury was detained (see below), RAB officers visited his apartment late at night.[119]

Amaan Azmi

Amaan Azmi, 57, a retired brigadier general, is the son of Ghulam Azam, a former leader of the Jamaat-e-Islami party who was convicted of war crimes and sentenced to death in 2013. Considering his age of 90, the court ruled that Azam would serve a life sentence rather than face execution. He died of a heart attack in prison in October 2014.

Amaan Azmi was picked up on the evening of August 22, 2016. About 30 men in civilian clothes entered his apartment building, telling staff that they were from DB. Abul Kalam Azad, an employee in the building, said that he saw security forces, most carrying firearms, with over a dozen vehicles cordoning the house:

I was downstairs and a few of the men started asking me about the whereabouts of Azmi sir. They initially introduced themselves as “people from administration,” and later they claimed they were DB. Azmi sir used to live on the top floor but they did not find him there. Since they could not find him, they blindfolded me and started beating me. I repeatedly said I did not know his whereabouts. At this point, some of the men asked me to give them the key to the empty apartment on the fifth floor. I replied that it was with the landlord. Then, they broke down the door and found Azmi sir. I heard sir say, “Since, you are going to take me, let me take some clothes.” But, they did not allow Azmi sir to do so. They escorted him to one of the vehicles. When he was in the car, he was blindfolded.[120]

Azmi’s wife, mother, and several other staff who were present confirmed that the men said they were from DB. Azad said that the men also seized six cellphones from people in the house, as well as hard disks from the CCTV installed for neighborhood security. The family has had no news of him since. They said Azmi had been concerned about his safety in the months before his arrest.

Secret Detentions: Disappearances Before Formal Arrests

Among the disappearances in 2016 are the cases of men whose whereabouts were unknown, with authorities denying any knowledge of an arrest, until they were brought back into the formal legal system, weeks or months after the original pick up, with police claiming that they had been arrested “the previous night.” They remained effectively disappeared until that time. In the cases of two men who were alleged to be militants, police brought them to a public meeting claiming they had surrendered. In May 2017, one man secretly detained in October 2016 was released outside Dhaka.[121]

Nur Mohammed

Nur Mohammed is a leader of the Jamaat-e-Islami in Jhenaidah district unit. His son, Mujahidul Islam, said that law enforcement officers picked up his father at about 1 p.m. on March 2, 2016, while going to the market on his motorcycle:

My father’s bike was not running properly, so he went to a garage in Hatekhola for repairs. The friend who was with my father told me that four to five people approached him and handcuffed him, and they dragged him into an easy-bike. When local people tried to stop them, the men introduced themselves as members of DB. Since then his whereabouts is unknown and his cell phone switched off. Police did not accept our GD.[122]

Sixteen days later, police claimed that Nur was arrested on March 18 in the district of Satkhira where he was “in hiding,” and that his information led to the seizure of 15 hand bombs, 40 kilograms of explosives, and jihadist literature.[123] A case was filed against him for possessing explosives and for the murder of a homeopathy doctor in Jhenaidah in January, for which ISIS had previously claimed responsibility.[124]

Noore Alam, Iftisham Ahmed Sami, and Nazim Uddin

Noore Alam, 23, a third-year student of chemistry at Nilphamari Government College, lived with his family in the Ukiler More area. On the night of April 11, 2016, he was picked up from his home by about 10 people who wore plainclothes and introduced themselves as officials from the “administration.” Kamrul Alam Nayan, his brother, said:

I was at the family shop next to our home. My brother was sleeping inside the house. Two people came to the shop after midnight and then two others joined them. They asked to buy a mobile charger. As we spoke, one of the men seized my phone and asked about my brother. I said that my brother was sleeping. When the men said that they wanted to talk to my brother, I asked them to come back in the morning. Then the four of them dragged me out of the shop, closed it, and forced me to our house. Four to six other men in plainclothes dress also joined them. They woke up my brother and gave him few minutes to dress. We asked for an arrest warrant or any legal documents, but the men assured us that they were officials from the “administration” and they were just taking my brother for interrogation, and that he will return in 20 minutes.[125]

The men dragged Noore Alam into a waiting microbus. Nayan immediately went to the Nilphamari Sadar police station, but the police claimed that they had not carried out such an operation. Other family members went to local RAB and DB offices, which also denied they had detained Noore Alam. On April 12, his family filed a GD with the Sadar police station.

Iftisham Ahmed Sami, a third-year university student, lived with friends in Dhaka. About 4 a.m. on April 29, 2016, Sami’s father, Iftekhar Ahmed Enam, received a phone call from his son’s friend and roommate:

The friend informed me that about 10 to 15 plainclothes men who claimed to be from the “administration” broke into Sami’s room and picked him up. A handcuffed young man, who was with the plainclothes people, pointed out Sami. The plainclothes men then asked Sami to change his clothes, and he was then handcuffed and taken to a car waiting outside.[126]

In subsequent days, the father went to the Boalia police station and the local DB and RAB offices, but they all denied any involvement in the arrest.

Nazim Uddin, 42, returned in July 2015 from Malaysia to live in his home town of Jessore. His wife, Nazma Aktar, said that her husband was visiting a friend in Dhaka when he was detained in the Pallabi area on May 25 by three men in plainclothes who claimed to be from the “administration.” She said:

The friend told me that they were on my husband’s motorbike when the people in plainclothes intercepted them. Two people dragged my husband into a vehicle and the other one seized the motorbike.[127]

Nazma looked for her husband in RAB and police stations in Dhaka, but no one provided any information. She filed a GD, although the police had initially refused.

On December 6, 2016, eight months after the first of these detentions, police announced that they had arrested Noore, Sami, and Nazim along with two other men they claimed were members of the banned Islamic militant group Harkat-ul-Jihad-al-Islami. When the three men were brought to court, they told the magistrate that they were picked up on earlier dates from different places, providing details. Kazi Shahabuddin Ahmed, assistant commissioner (prosecution), told the court that the five “Huji operatives knew how to concoct a story.”[128] The magistrate remanded all five to police custody.

Moulana Mohammad Akhter Hossain

Moulana Mohammad Akhter Hossain, a 28-year-old imam, was picked up by law enforcement officers on May 3, 2016. His brother, Mushfikur Rahman, witnessed the arrest:

It was around 9:30 p.m. I was asleep in my house at Sukhan Pukur village in Rangpur, when five to six men came and said that they wanted to talk to me and Akhter about the Union Parishad elections that had just taken place. I said that my brother was at his in-laws’ house in Birbiria. The men, dressed in plainclothes, then put me inside a white microbus, taking away my cell phone. I took the men to Akhter’s in-laws’ house. I was asked to call Akhter’s name. When Akhter’s wife Romana opened the door, we all went inside. The men then said that they were members of DB and that they needed to take Akhter away and talk to him, as he could help locate some other people, and that he would be returned after an hour.

Both of us were then taken inside the microbus. They told Akhter, who was anxious, to stay calm, as otherwise we would be blindfolded and handcuffed. The microbus then stopped in front of Pirgacha Union Parishad Office and the men told me to get off. They also returned my cell phone. I asked them to let my brother go along with me, but the men said, “We have your phone number and we will communicate with you when we need to.”[129]

The next day, Akhter’s family searched for him at the police station and local DB and RAB offices. All denied involvement in his detention. On May 6, Mushfikur said he went to the Pirgachha police station to file a GD but was told he could only file a missing person complaint. Two months after he was disappeared, on July 1, police said Akhter was arrested in Dhaka, and that he was a member of the JMB.

Monirul Islam Babu, Abdullah Al Sayem Turjo and Shoaib Biswas

On May 12, 2016, Monirul Islam Babu, 28, Abdullah Al Sayem Turjo, 25, and Shoaib Biswas, 26, were picked up in and around Kalishpur in Khulna, where they are all from.[130] On June 12, one month later, the police claimed they were arrested in Dhaka for militancy.[131]

Shoaib Biswas, a teacher in the Arabic Department at Bismillah Nagar Madrasa, was detained in the morning on his way to work. His father, Maulana Abdus Sattar, spoke with his son when he was subsequently taken to court:

He told me that he was going to the madrasa on his bicycle when he was picked up by a few men in plainclothes and taken in a white microbus on which it was written, “Emergency Electricity.”[132]

Abdullah Al Sayem Turjo is a teacher at the Bismillah Nagar Madrasa in Harintana, Khulna. His colleague, Mufti Hafizur Rahman, said:

On May 12 at around 6:15 p.m., both of us left the madrasa on our bicycles. When we reached close to Mostor intersection, a 50-year-old man blocked our way. A white microbus with a sticker “Emergency Electricity” was parked there. The person asked for our names. Then the man asked me to leave and told Turjo to stay. I saw some people came down from the microbus and grab Turjo and put him on the microbus. Then the microbus stopped in front of me and they took away my cell phone and left.[133]

The next day, Turjo’s father filed a case at the Harintana police station alleging that some unknown people had kidnapped his son.[134]

Monirul Islam Babu is an electrician who was picked up from his home. His mother, Khadiza Begum, witnessed the incident. She said:

At around 9 p.m. a man came to our home. When Monirul came out, the man asked whether he was Monirul. The man then left without saying anything. A few minutes later, over 10 people came to the house accompanied by the person who had come earlier. They forcibly took Monirul. When we tried to stop them, they claimed to be members of DB. Some of them had pistols in their waist. They told us that Monirul will be released after he had identified some people. They then dragged Monirul into a white microbus marked “Emergency Electricity.” They asked us to communicate with Khalishpur police station and left quickly.[135]

The following day, the family filed a GD with the Khalishpur police station. When he was eventually produced in court after a month-long secret detention, Monirul Islam spoke to his father and told him that “they were blindfolded inside the microbus and traveled a long way. They were kept in a dark room, but not blindfolded or handcuffed.”[136]

Rashidun Nabi Bhuiyan (Tipu)

Rashidun Nabi Bhuiyan, 31, also known as Tipu, was living at his village home in the district of Comilla. His wife, Tahera Taslima, said that on the night of May 19, 2016, some uniformed and plainclothes officers raided their house at about 1:30 a.m.:

We were woken by the sound of vehicles and people’s voices, and then around 15 to 20 police and others stormed into our house. They showed me a photo and asked me, “Do you know that person?” I replied, “Yes, he is my husband.” My husband then came out of the room. They tied his hands and blindfolded him. I went outside the house and urged them not to take him away, and one of the police officials in uniform told me that my husband was a criminal who had killed two bloggers.[137]

The following morning, Tipu’s family members went to the local Nangalkot police station find out whether he had been detained. “The police insisted that they didn’t know anything about the incident,” his wife said.[138]

In subsequent months, family members met police and RAB officials many times, but no one provided information on Tipu’s whereabouts. On October 16, 2016, five months after Tipu’s detention, police in Dhaka held a press conference claiming that he had been arrested the previous night at the Sayedabad bus station in Dhaka. Police claimed that Tipu was a leader of the Islamic militant organization, Ansar al-Islam, and that he led the team of five men who attacked Nazimuddin Samad, a university law student and secular activist, on April 6, 2016. Police said Tipu had confessed and had provided the names of his accomplices and information on the subsequent murder of gay rights activists, Xulhaz Mannan and Mahbub Rabbi Tonoy, on April 28.

Brothers Ashfaq-e-Azam Apel and Azharul Hannan

Ashfaq-e-Azam Apel, 27, a recently graduated software engineer, lived in his family home in the city of Rangpur. His father, Shamsul Hoque, said that in the early hours of June 7, 2016, Ashfaq was picked up from the family home by law enforcement officials in front of him and three other family members. He said:

Plainclothes dressed men introducing themselves as from the “administration” came to our house between 1:30 a.m. and 1:45 a.m. As we opened the door, they—two of them carrying firearms—told me that they needed to interrogate my son and that he will be returned soon. I allowed them to take my son. They put my son into a microbus which was escorted by two motorbikes and another SUV. They took away his mobile phone.[139]

In the morning, the family went to the DB office in Rangpur and the local police station, but they all denied Ashfaq’s arrest. The Kotwali police station refused to accept a GD from the father and so he instead filed a missing person report. “I also approached RAB-13 office but they also denied arresting my son,” the father said. They said, “We don’t have him.”[140]

On February 1, 2017, seven months after he was originally picked up, RAB said that they had arrested Ashfaq along with three other men following a raid on a hideout in Dhaka. RAB claimed that the men belonged to the JMB and that Ashfaq was “the group’s IT expert. He was in charge of maintaining websites and providing technical support.”[141]

Shamsul Hoque also said that on January 3, 2017, his younger son, Azharul Hannan, a marine engineer who was present when Ashfaq was picked up in June, was detained in Chittagong. Men put him in handcuffs when he stepped out of the Navy Fleet Club, a navy-run hotel, where he was attending a conference organized by the Military Institute of Science and Technology. Hoque said that police at Bandar police station refused to file a GD, citing an instruction from “high ups.” The family have not heard anything more from him.[142]

Rashid Gazi and Kamruzzaman Sagor

Rashid Gazi, 22, a second-year student at Jessore University Science and Technology, and Kamruzzaman Sagor, 22, a student at Jessore MM College, were staying at a private hostel when they were picked up on afternoon of June 19, 2016. Authorities denied the detention at first, and the students were held illegally for nearly a month. RAB eventually claimed that they were arrested on July 14.

Ripon Sardar, Rashid’s uncle, talked with the two men when they were at the police station and when they were brought to court. Sardar said that they told him:

Five to six men in plainclothes, identifying themselves as members of DB, picked up them in a white microbus on June 19. They were blindfolded and handcuffed. The microbus stopped somewhere and another person in the same condition was put next to them. The three were taken into a room where they were kept blindfolded and handcuffed. A few days later, Rashid and Kamruzzaman heard some heated words exchanged which was followed by a gunshot. They never saw or heard the third person again.[143]

Hasnat Karim and Tahmid Khan

Armed gunmen attacked the Holey Artisan Bakery on the night of July 1, 2016, killing more than 20 people and holding others inside hostage. The next morning, the hostages were rescued after security forces stormed the café, killing the gunmen. The hostages were taken to DB headquarters, where they were questioned by the authorities. This included Hasnat Karim, 47, who had gone to the restaurant with his wife and two children, and Tahmid Khan, 22, who had gone to the restaurant with two friends.

While all the other hostages were released, Karim and Khan were held illegally for a month with the authorities issuing contradictory statements about whether the men were in their custody. Karim has dual nationality with the UK, while Khan is a Canadian resident. On July 13, 2016, nearly two weeks into his illegal detention, Karim briefly met with his wife and mother.[144]

On the evening of August 3, police informed the media that both men had been arrested in Dhaka that day on suspicion of involvement in the Holey attack. The following day, they were brought to a magistrate court which passed an order remanding both into police custody for eight days for questioning. In October, the police told the court that it no longer believed that Khan was involved in the Holey attack, but filed a case against him for “a lack of cooperation with the policing authority,” claiming that he failed to appear at two police interviews on July 10 and 21, a period when he was in state custody.[145] In April 2017, a court acquitted him of this charge. Karim, however, remains in jail on a case filed relating to the Holey attack.

Humam Quader Chowdhury

Humam Quader Chowdhury, 33, is the son of Salahuddin Quader Chowdhury, a prominent leader of the BNP who was executed in November 2015 following his conviction for war crimes. Humam Chowdhury is also involved in BNP politics. On the morning of August 4, 2016, he was traveling with his mother to the Dhaka District Court where they were both due to attend a hearing involving a cybercrime case alleging their involvement in the leak of the judgment convicting Humam’s father for war crimes.[146] Humam’s mother, Farhat Quader Chowdhury, said:

It was about 11:30 in the morning. We were on the way to court. Just before you get to the court you have to turn right. The traffic signal was red, so we stopped. The road was quite crowded. A couple of men came up dressed in plainclothes, and opened the door on the right. They asked my son whether he was Humam Quader Chowdhury and he replied that he was Humam, but that he had to go to court. They said, “No, you are coming with us.” Humam then got down from the car. I didn’t know what to do. They did not seem to have a car—as far as I could see they were walking him down the road.[147]

On February 24, 2017, the UN Working Group on Enforced or Involuntary Disappearances issued a statement calling on the Bangladesh government to provide information as to the whereabouts of three men, including Humam.[148] A week later, on March 2, Humam was released blindfolded and disoriented on the roadside, close to his family home in Dhaka. Humam was unable to explain the location where he had been held.

Mohammad Akhtaruzzaman and Mohammad Hafizur Rahman

Mohammad Akhteruzzaman, 15, and Mohammad Hafizur Rahman, 17, both students at Kolabari Dakhil Madrasa at Ghoraghat in Dinajpur, were picked up within a week of each other. In November 2016, their fathers held a joint press conference at Dinajpur Press Club.

Akhtaruzzaman’s father, Sarowar Hossain, an agricultural worker and small businessman, said that his son was picked up from his family house early in the morning on September 28, 2016, by law enforcement officials:

They said they wanted to question Akhtaruzzaman. I asked them what offense did Akhteruzzaman commit? But they did not answer. My son was sleeping in his grandfather’s house. I woke him up and handed him over to the men.[149]

On October 16, Sarowar Hossain filed a GD at his local police station in Ghoraghat Upazilla stating that his son had gone “missing.” At the press conference on November 6, he appealed to the government for his son’s return. At the same press conference, Zillur Rahman, father of Hafizur Rahman, said that his son was picked up on October 4:

At approximately 6 p.m., a group of people introducing themselves as members of a law enforcement force came to my grocery shop situated at Raniganj bazaar and, in my absence, took my son away.[150]

On November 23, RAB brought both Akhtaruzzaman and Hafizur Rahman—along with one other man from the same madrasa—to an “anti-militancy” function in Rangpur, and said that the men were JMB operatives who had surrendered to the authorities. Home Minister Asaduzzaman Khan handed over a check for 500,000 taka (US$6,200) to each of the men for their “rehabilitation.”[151] A RAB press release said that Hafizur Rahman and Akhtaruzzaman were brainwashed and radicalized by a JMB recruiter and assigned to carry out subversive activities. They had decided to surrender to law enforcers after the Gulshan and Sholakia attacks, and family members who inspired them to surrender took the two young men to RAB, the release said.[152]

Hafizur Rahman’s father gave a different account of the Rangpur event, stating that he first came to know about the ceremony when RAB told him to be present. He said he does not know where his son has been kept since the ceremony:

I first spoke to my son on the phone 25 days after the ceremony and have since had further conversations. The last time he called me was on January 13, when he asked me about my health and hanged up. That’s it. I have no idea where my son is.[153]

Khairul Islam

Khairul Islam, 26, a student at the Islamic University of Technology, was living with his family in Gazipur. His father, Abul Kashem, said men wearing jackets with “DB” written on them came to their house around midnight on the evening of October 21, 2016:

They said that they were looking for Khairul. I asked them to show any warrant of arrest but they replied that the SP [police superintendent] has asked them to take him away.[154]

However, seven days later, on October 28, 2016, police claimed to have arrested four suspected members of the banned organization Harkat-ul-Jihad-al-Islami, Bangladesh (HuJI-B), along with 14 petrol bombs and four crude bombs in the Nandoain area of Gazipur city. One of them was Khairul, who had been in their custody one week already. The police superintendent in Gazipur said the members of the banned militant outfit were arrested during a raid at an abandoned cottage inside a forest in Joydevpur at about 8 p.m. the previous day.[155]

III. Cases of 19 “Disappeared” since 2013

The 19 cases of enforced disappearances that occurred over a two-week period at the end of 2013, described in detail below, show the failure of authorities to address allegations and ensure accountability.[156] Some of these men, all Dhaka-based supporters or activists of the Bangladesh Nationalist Party, may have been involved in wrongful actions during the violent election-time protests that began a month before their disappearance. Their family members say that if suspected of criminal action, they should have been prosecuted. Their families have made repeated appeals to the government, visited DB and RAB offices, and sought police investigations.

November 28: Disappearance of Samarat Molla and Khaled Hossain Sohel

Khaled Hossain Sohel, disappeared since November 28, 2013. 

© Private

On the morning of November 28, 2013, six friends living in Old Dhaka had gone to visit a mutual friend imprisoned in Dhaka Central Jail. Five of them were picked up outside the jail by men in civilian clothes. The sixth member of the group was spared because he had left minutes earlier to perform his prayers.

Samarat Molla, disappeared since November 28, 2013. 

© Private

This case is unusual as three of the friends, who were supporters rather than post-holders of the BNP, were later released and therefore became witnesses to the detention. The other two, Samarat Molla, 27, and Khaled Hossain Sohel, 28, who held posts in the student wing of the opposition BNP, remain disappeared at time of writing.

The Pick Up

On the morning of November 28, Samarat Molla, Khaled Hossain Sohel, and four other BNP supporters—named here “W,” “X,” “Y,” and “Z”—went to the Dhaka Central Jail to visit their mutual friend Sonjoy.[157] All of them lived in Sutrapur, an area in Old Dhaka.

The men came to the prison in two groups at around 11 a.m.: Y, W, and Z in one group, and Samarat, Sohel, and X in another. They obtained “jail tokens” and entered the prison at around noon. Their friend Sonjoy, however, was not brought to the prison meeting room, and after 20 minutes they left the jail.

According to W, X, and Y—the men who were subsequently released—at around 1:15 p.m., Z wanted to say his prayers and went to a nearby mosque, leaving the five friends standing outside the jail. Y then told the others that he had some work and started to leave the prison area. As Y walked away, two men in civilian clothes approached him. He then walked back with about six men following him. Four men, who were all in civilian clothes and did not appear to have any weapons on them, asked each of them their names. “When Samarat Molla gave his name, it was clear from the men’s response that they were most interested in him,” one witness said. “They took all five of us to a silver colored microbus which was standing just outside the jail wall.”[158]

According to Samarat Molla’s family members, W, X, and Y later told them that the men had beat up Samarat, accusing him of arson attacks.

After nine days, on December 7, W, X and Y, who were not BNP post-holders, were told that they would be released the following day. They were warned against talking about their detention. At about midnight, the three of them were put into a car. The car stopped after about an hour and a half, and they were pushed out of the vehicle and told to run. They later discovered they were in Bikrampur.[159]

Samarat Molla and Khaled Hossain Sohel remain disappeared.

State Response

A day before he was picked up, police had visited Khaled Hossain Sohel’s house in Bangla Bazaar where he usually lived with his wife. The BNP student activist, who according to his family had no criminal cases filed against him, was residing elsewhere in order to avoid arrest. After the police left the house, Sohel’s wife, Sayeed Shammi Sultana, said she phoned her husband to warn him.[160]

Sultana discovered her husband was missing after his colleague, Selim Reza Pintu, said that Sohel’s phone was not reachable.[161] Fearing he had been arrested, family members and friends started contacting different police stations. Meanwhile, Samarat’s family first heard that the men had been picked up by law enforcement authorities late at night on November 28 when they received a call from a friend.[162]

The following day, Sultana lodged a missing person complaint at the Chowk Bazaar police station.[163] Meanwhile, Samarat’s sister said that she was initially told she could not file a General Diary if she alleged detention by law enforcement authorities, and was told to come back the next day where she was only allowed to lodge a missing person GD.

Sohel’s wife, Sultana, said that she and others assumed that DB officials were responsible as the men who took the five friends were not in uniform, which is usually true of the DB. However, at DB headquarters officers denied the men were in their custody. “The first question the police asked was whether they had any political affiliations. They seemed reluctant to speak to us and told us not to hang round here,” Sultana said. She said she and other family members continued to visit the DB office. “The last time we went was the tenth day after they were taken [December 8], and were told not to bother coming.”[164]

On December 8, three of the friends who had been taken with Sohel were released. One of the men phoned Sultana and she met with him to find out what had happened to her husband. All three are still in hiding at time of writing.

In May 2014, six months after the men disappeared, the police set up a 40-member anti-kidnapping team, and Sultana lodged an application.[165] Soon after, she met with an additional deputy commissioner of police who put her in touch with an official from DB. However, both families have received no further information about the whereabouts or fate of Samarat or Sohel.

December 2: Disappearance of Four Men from Shishu Park

Mahfuzur Rahman Sohel Sarkar, disappeared since December 2, 2013. 

© Private

In the early afternoon of December 2, 2013, seven activists of the BNP’s student wing, all residents of the Bangshal area in Dhaka, congregated inside the Suhrawardy Udyan park in central Dhaka. They included Mahfuzur Rahman Sohel Sarkar, 35, the Chhatra Dal vice-president of Bangshal Thana; Habibul Bashar Zahir, 27, and Parvez Hossain, 27, the president and secretary of BNP ward 71; and Md Hossain Chanchal, 32, a student wing member.

Habibul Bashar Zahir, disappeared since December 2, 2013.

© Private

Five of the activists—including the four men named above—walked to a nearby restaurant at an intersection in central Dhaka known as Shahbagh, while the other two went to the neighboring Shishu Park to purchase tickets so that after lunch they could meet inside.[166] As the five men left the Shahbagh restaurant and walked back toward Shishu Park, four of them—Sohel, Zahir, Parvez, and Chanchal—were picked up by law enforcement officers dressed in civilian dress and bundled into a microbus. Two of the three remaining men witnessed the detention and asked not to be identified. The four men who were picked up have not been seen since.

The Pick Up

One of the men present at the restaurant, along with the other four who were disappeared, said that that the group had planned to meet at Shishu Park because they considered it safe. He said security forces caught up with them as they were leaving the restaurant:

I was the first to leave, and I noticed as I left that there were two microbuses parked ahead of us, but I got distracted because I received a phone call. I slowed down and the others went ahead of me. As they got closer to Shishu Park they came to an area of pavement where there are boundary railings of Shishu Park on the right and on the left, another set of railings which separate the pavement from the road. As they entered this area, I suddenly heard someone shouting, “Catch them, catch them.” The men could not escape as there were these railings on both sides. As this was happening,
I had not quite reached the part of the pavement [with the railings] and so I could cross the road, which is what I did. I saw my friends being grabbed and put into a microbus by men dressed in plainclothes.[167]

As soon as the vehicles disappeared, the witness called his political colleagues to warn them to stay away from Shishu Park.[168] One of the two men that had
 been waiting inside the main entrance of the park also
 witnessed the detention.[169]

State Response

Md Hossain Chanchal, disappeared since December 2, 2013. 

© Private

Sohel’s father, Md Shamsul Rahman, said that he received a call from one of his son’s colleagues who witnessed his son’s detention. He said he then tried to find his son:

After I had finished the call, another son of mine called Sohel’s phone. It was answered but there was a lot of noise and crying. I went to Shahbagh police station and asked whether four people had been taken, but the police denied this. I found someone who I knew at the police station, and he showed me the cells and said, “Look, he is not there.” I tried to file a GD at the station but the police did not allow me to do that. I went the following day to the DB office but they said that they were not involved and had no information.[170]

Rahman was later able to file a GD in his local police station in Bangshal, but the police only allowed him to file a missing person complaint, and not allege that his son was taken by law enforcement officers.[171]

Parvez Hossain, disappeared since December 2, 2013. 

© Private

Parvez’s wife, Farzeena Akhter, said her husband had about six criminal cases lodged against him, which she claimed were all false allegations for his political activities.[172] When she and other family members went to the DB office, they were not allowed into the building. The family filed a missing person GD on December 14, 2013, at the police station.

Chanchal’s wife, Reshma Akhter, said that when her husband, who she said had no criminal cases against him, did not return as planned for a family outing, she started calling him but his phone was switched off.[173] She finally called Anwar Hossain, Chanchal’s brother. Anwar went to the police but was told that they had not arrested anyone by that name.[174] Chanchal’s relatives also went to the DB and RAB offices, but the officials denied having him in custody. They lodged a missing person GD on December 22.

Zahir’s brother, Kamal Hossain, who said that his brother had as many as 25 criminal cases of a “political” nature against him, said that the police only allowed him to file a missing person GD, which he did on December 14.[175]

A day or two after the four men were picked up, a local businessman said he saw the four men detained at the DB office:

On December 3, I visited the DB office at about 3 p.m. to meet a friend of mine who worked there. While I was there, I saw a man detained inside the DB office. On the following day, Sohel’s father came to meet me and said that his son and three others had been picked up by the police. Sohel’s father showed me a photograph and I recognized him as being the same person who I had seen the previous day in the DB office. I returned to the DB office a day or so later to confirm this. I made another appointment with the DB officer. I did not go directly to his office but went to an area on the ground floor, and I saw about seven detained men. Subsequently, I saw the photographs of the three other men that were picked up and they were of the same men that I had seen inside.[176]

The businessman then discovered that Sohel was thought to be “Chacha Sohel,” someone the authorities considered to be “notorious” in the area.

A senior police officer told me that there are strict instructions from the Prime Minister’s Office that Chacha Sohel should not be released because of his crimes. He then told me not to get involved. I called a friend in the Detective Branch with the rank of inspector and he advised me not to call again on this matter to avoid trouble. I was frightened and stopped communication with the BNP people.[177]

The businessman said that he also introduced the relatives of some of the families to a retired major, who said that he was willing to help intervene in the case.

On around the 13th of December, I brought the major [name withheld] to meet Sohel’s father. The father explained what happened to his son and the three other men. The major then called one of his friends serving in DB, and it was on speakerphone and I heard what was said. One official said, “Yes, Sohel was in our custody and we kept him for observation.” But he said that Sohel was no longer in the DB office, and that he did not where he is.[178]

December 4: Disappearance of Six Men from Bashundhara

Sajedul Islam Sumon, disappeared since December 4, 2013. 

© Private

At about 8 p.m. on December 4, 2013, six men were picked up outside a building under construction in Dhaka’s Bashundhara Residential Area.

Zahidul Karim Tanvir, disappeared since December 4, 2013. 

© Private

The six men picked up were Sajedul Islam Sumon, 36, the general secretary of BNP ward 38 in Shaheen Bagh; Sumon’s cousin, Zahidul Karim Tanvir, 33, whose family owned the under-construction property; Mazharul Islam Russel, 26, Md Al Amin, 26, and Asaduzzaman Rana, 27, three students at Jagannath University who were preparing to take the civil service examinations; and Abdul Quader Bhuiyan Masum, 22, a finance student at Titumir College. Sumon was the only post-holder for the BNP, and according to family members, the only one with a criminal case filed against him; the others were all supporters and activists. There were two other men present at the time, but they managed to escape.

The Pick Up

Mazharul Islam Russel, disappeared since December 4, 2013. 

© Private

One of the two men who escaped said that the meeting had been called by Sumon. RAB officers arrived soon after:

For 40 or 45 minutes we were chatting. We were talking about the momentum of protest. After that, four of the men left by foot, leaving four of us—Tanvir, Sumon, myself, and [name withheld] behind. Two of us then went to the other side of a cement mixing machine to have a smoke. Suddenly we saw vehicles approaching. There was more than one car, but I can’t say exactly how many. There were some men in black uniforms who came out of the vehicles. They had weapons. The cars had their lights on so I could see the men, the color of their uniform. There was one car with “RAB-1” written on it. I am sure that it was definitely RAB because of the clothes, and because I saw RAB-1 logo on the car. I could make out that people were being taken into a vehicle and that it left.[179]

Asaduzzaman Rana, disappeared since December 4, 2017. 

© Private

A construction worker at the site who witnessed the detention said he knew Tanvir because the family owned the property and had seen Sumon earlier. He said:

Tanvir and Sumon were still standing there talking when the vehicles came. Four of the men [who came down from the vehicle] wore civil dress and another seven or eight were dressed in the black clothing of RAB, with a cloth around head. All the men had guns. Sumon and Tanvir were both beaten up before they were put in the car. “Why you are arresting us, we are not these type of people,” they said at the time of being picked up.[180]

Six hours later, early the following morning, a contractor said he was returning from a night shift to Shaheen Bagh, the area where Sumon’s family lives, when he saw Sumon, whom he knew well, inside a car that he thought belonged to law enforcement authorities.[181]

State Response

Md. Al Amin, disappeared since December 4, 2013. 

© Private

Sumon was not at that time staying at his home in Shaheen Bagh because he feared arrest, and was instead living with his cousin, Tanvir, at their apartment in Bashundhara Residential Area. Sumon’s sister, Sanjida Islam, said that they first heard that Sumon had been picked up when her family in Shaheen Bagh received a call from her aunt, Tanvir’s mother:

My aunt said that it was RAB. Within half an hour my older sister, my husband, and my mother went to the RAB office in Uttara. I was pregnant at the time so I did not go. RAB people at the gate did not allow my family members in. The men at the reception denied they were involved in the detention. My sister, father, and mother stayed outside the RAB office throughout that night, and for the next three days one family member or the other was present outside the RAB office.[182]

Abdul Quader Bhuiyan Masum, disappeared since December 4, 2013. 

© Private

At about 11 p.m., one of the two men who had escaped being picked up came to their house though the back entrance. He told the family that Sumon had been taken away in RAB vehicles. The following day, Sanjida said that family members went to file a complaint with police:

The next day my mother and older sister went to our local police station in Tejgaon to file a GD but the police said that they had to go to the police station of the PO [place of occurrence]. They then went to Vatara police station but the duty officer refused to allow them to file the GD if they claimed that RAB had taken my brother. They said that they could only give a GD if they said that Sumon was missing. As we did not want to do that, we did not file a GD.[183]

Through family connections, Sumon’s family contacted a senior RAB officer [name withheld]:

He began to speak to my mother on the phone, and to send messages. He made her believe that Sumon was going to be released soon. He said for example one day, “He will be with you next time you say your prayers.” Many times, he said that they were going to release Sumon. But nothing happened. This went on for two months.[184]

Family members continued go to the RAB-1 office and RAB headquarters. At the end of January, Sumon’s mother and sister were invited to the office to meet an RAB-1 officer. Sanjida said:

He admitted that Sumon had been detained. They praised my brother, saying that Sumon is good person, had a good reputation. He said that his boss had gone to see Sumon recently, to make sure he was all right in their custody. He suggested to us that we should communicate with Ziaul Ahsan, who was in charge of operations. He gave Ahsan’s land line and mobile number to my mother. When we met Ziaul Ahsan, he was very arrogant. He said, “Why are so many army officials calling about Sumon? We have told you that we don’t have him and that we are searching for him.”[185]

The family gave its first written application to RAB on March 18, 2014, and has since given at least 12 further applications to RAB (most recently on August 21, 2016), and five to other government authorities, including the home ministry, police, and military intelligence. The family has also made a complaint to the National Human Rights Commission and filed a habeas corpus petition in court.

In May 2016, Sanjida met again with one of the RAB officials the family had met earlier, who had been a senior RAB-1 officer at the time of her brother’s disappearance, but had since left. He confirmed in a private meeting at a restaurant that RAB-1 had conducted the operation to pick up Sumon. He said that the six men had been in his custody and that he received an order to kill them, but he refused.[186]

According to Sanjida, the official said that RAB’s counterterrorism branch—under the command of Lt. Col. Abul Kalam Azad,[187] who subsequently became head of RAB’s intelligence wing—took the men from his custody. The official assumed they had been killed.[188] In August 2016, Sanjida met with Azad, but he denied any involvement and, according to Sanjida, said: “We are searching. I will try to let you know whether he is alive or anywhere else.”

Russel’s sister, Nusrat Jahan Laboni, said she waited all night for her brother to come home, and in the morning discovered that his friends were missing as well.[189] Family members approached RAB, DB, and various police stations several times but no one had any information about the detentions.[190]

Al Amin’s father filed a missing person GD at Badda police station that covered the area where they lived.[191] The family also managed to file a First Information Report on January 26, 2014.[192] Al Amin’s cousin, Yakoob, went to the construction site and the workers recognized his photograph, confirming that Al Amin was detained by RAB-1:

I asked the workers how they knew that it was specifically RAB-1. They said that the security guards who work in that area are a little educated. After Al Amin bhai and his friends were taken away by RAB, the workers went running toward the security guards, and the security guards told them that the vehicles had “RAB-1” written on them.[193]

Yakoob also went to the RAB office, where officials asked questions about witnesses to the abductions:

The RAB officer asked me if I had any record or proof with me about the complaint. I replied to them that I had a recording of the statement that the workers and the caretaker gave. I showed the officer the recording. He took a record of the recording. Then I left the office and came back home. Afterward I again contacted the officer to ask them if he has found anything about them yet. The officer replied that he will call us when it will be time. I called him three more times, but he couldn’t tell me anything else.[194]

Masum’s mother, Ayesha Ali, said the family went to a number of police stations: “They said that no one had been arrested. On December 6, we went to file a GD in Tejgaon industrial area, but they only accepted a GD if we said that he was missing.”[195]

Rana’s sister, Meenara Begum, said that she too went to the police and RAB offices after she heard of the detention. They also filed a police complaint reporting that Rana was missing.[196]

Tanvir and Sumon are cousins. Tanvir’s mother, Nilifur Rana, also said that she went with her relatives to meet with RAB and DB officers, but everyone denied the detention.[197]

National Human Rights Commission

A year after the detentions, in December 2014, Sajedul Islam Sumon’s family made a formal complaint to the National Human Rights Commission. On December 17, the then chair of the NHRC wrote to the most senior civil servant of the home ministry setting out the allegation and “appealing to the government to take necessary action to bring back the son of Hazera Khatun and the others to the parents,” and to inform NHRC what action the ministry had taken by January 15, 2015.[198]

The ministry did not respond to this letter or to six other monthly reminders that the NHRC sent. However, on August 28, 2015, the ministry finally replied, stating that Sumon’s father had filed a case with the Vatara police station on January 26, 2014, and that the case was under investigation.[199] In a letter dated November 15, 2015, Sumon’s mother wrote that they had never filed a case of this kind because when they had gone to do so “the police refused to take the case.”[200]

The NHRC then wrote to the ministry stating that the police report did not contain any specific step as to “how you are trying to get the victims back,” and asked for a detailed report by December 20, 2015. On January 14, 2016, police sent a letter to Sumon’s mother asking her to come to the police station. This meeting never took place. Instead, Sumon’s family sent a note to the police setting out the details of Sumon’s disappearance.

Response from Courts

In March 2016, Sajedul Islam Sumon’s mother filed a habeas corpus petition before the High Court.[201] She said that her son was illegally detained by RAB. The petition said that authorities had shown no inclination to investigate the incident, and that the court should order government authorities to produce him before the court.

On March 10, 2016, the court passed a rule nisi calling upon the Bangladesh government and various policing bodies to “show cause as to why the arrest/abduction/causing disappearance of the petitioner’s son Sajedul Islam Sumon … should not be declared to be illegal and without lawful jurisdiction,” and pass such orders as the court considers necessary.[202]

Following this order, the inspector general of police responded in an affidavit, “It was learnt from the respective units that neither Rapid Action Battalion nor any other unit of Bangladesh Police arrested said Sajedul Islam Sumon.”[203] RAB also filed an affidavit with the court stating, “RAB-1 did not pick up or arrest the petitioner’s son Sajedul Islam Sumon and others,” and that “we are trying to find out the victims.”[204]

There had been no further court hearing at time of writing, since the High Court passed its order.

Al Amin’s family was the only one to file an FIR involving the abduction.[205] His nephew, Yakoob Ali, said that some six months after the case was filed, an officer from the Vatara police station called and asked if the family had received news about Al Amin. “I said that it was the police that were supposed to be the ones providing the information.”[206]

In response to the court order following the habeas corpus application by Sajedul Islam Sumon’s family, the police filed documents relating to its investigation into Al Amin’s family’s FIR with the court. These stated that after Al Amin’s father filed a case in January 2014, a police inspector had prepared a draft map; taken statements from the petitioner, people in the surrounding area, and a witness; and had collected the victim’s mobile phone records. Police said that three investigating officers had been assigned to, and then taken off, the case. The letter concluded by saying the investigation revealed that along with Al Amin, Sajedul Islam Sumon had been abducted by “an organized criminal gang” that they were trying to identify and catch. It stated: “The case is under investigation and we are deploying modern technologies.”[207]

Dhaka Metropolitan Police authorities also said that on November 19, 2014, the investigation responsibility was transferred to the Detective Branch of the police.[208] In April 2016, following the March court order seeking state response to the habeas corpus petition, DB officials contacted Al Amin’s family and asked to get more information about the incident. Al Amin’s cousin said that the whole exercise was cruel and farcical: “I felt it was like a joke—him coming after three years and asking about [my cousin] like this. He said, ‘Don’t worry, you will get justice.’”

December 5: Disappearance of Adnan Chowdhury

Adnan Chowdhury, disappeared since December 5, 2013. 

© Private

Early on December 5, RAB men came to the house of Adnan Chowdhury, 28, woke him up, and took him away in front of his father and wife.

The Pick Up

Chowdhury, a BNP supporter, lived with his wife and parents in Shaheen Bagh, the same area of Dhaka where Sajedul Islam Sumon lived.

Marjina Sultana Tonni, his wife, said that Adnan came home late the night of December 4 after visiting the family of local political leader, Sajedul Islam Sumon, who had been picked up along with five party colleagues.[209] Later that night, there was loud knocking, and Adnan’s father, Ruhul Amin Chowdhury, answered the door. He told Human Rights Watch:

There was a knock on the door at about 2 a.m. When I asked, one of them said that they were from the “administration.” I did not want to open the door, but he said that they were from a government force and so “I must open the door.” There were perhaps 15 to 20 people who came into the house. One of them asked, “Where is Adnan sleeping?” I showed them the room. Some of the men were wearing RAB uniforms with “RAB” written on it on both the front and back. Not all of them were wearing a uniform, some were wearing civil clothes. They told me to sit down in another room.[210]

Adnan’s wife said that soon after, some of the men entered their bedroom. She said:

When the men opened our door, they asked me to leave the room. I then heard them telling Adnan to change his clothes. I heard some of the men say, “We should talk to his wife and show some sympathy,” but they didn’t talk to me. Some of the men were wearing black uniforms, the uniform of RAB. Others wore civil dress. One had a jacket with the letters “RAB” written on it in yellow. I saw about 5 or 6 people. Some searched the rooms. At one point, one of the men said, “We will send him back.” Another man said to me, “Don’t worry.”[211]

Ruhul Amin Chowdhury said the officials asked Adnan some questions and then took him away. Some of the other men also searched the rest of the house, and questioned their tenants. He said that his son “was surprised, but did not appear afraid.” He saw that the forces had arrived in at least two microbuses and a jeep.[212]

Adnan was a BNP supporter, but he was not particularly politically active. According to his father, Adnan already had a visa and was planning to migrate to Malaysia for work. “Adnan probably didn’t think it was so serious. He didn’t realize that Sumon will be taken and that they will come after him right away,” Ruhul Amin Chowdhury said. “None of us imagined that something like this can happen. That people will disappear.”[213]

State Response

The next morning, when Adnan, who did not have any criminal cases filed against him according to his family, did not return home, his father went to the RAB-2 office, the DB office, and the Tejgaon police station to look for this son, but no one could provide information.

I went back a number of times [to the police station] over the next month to file a GD, but they did not let me file one if I alleged that RAB was involved. I then agreed to drop the word “RAB” and instead put “law enforcement agency,” but the police still did not allow me to file a GD. As a result, I did not file a GD.[214]
 

Adnan’s father said that authorities violated his trust:

I was sure that if they [RAB] don’t find anything against Adnan, they will let him go. They said, “We are taking him. We will bring him back.” They betrayed us. They said that they were going to return my son, but they told lies. After the day I visited RAB-1 and RAB-2, I lost all faith in them and did not visit them again. I personally handed over my son to RAB and now they are denying that, so why should I go to them?[215]

Another eyewitness saw Adnan in security force custody when Mohammad Kawsar, 22, was detained shortly afterward.

December 5: Disappearance of Mohammad Kawser

Mohammad Kawser, disappeared since December 5, 2013. 

© Private

Shortly after RAB picked up Adnan Chowdhury, they brought him to identify Mohammad Kawser, 22, a driver who lived in a room in a compound in West Nakhalpara, a short walk from Adnan’s house.

The Pick Up

The gate of the West Nakhalpara compound where Kaswer lived with his wife and child was locked on the night of December 5. The caretaker, who had the key to the gate, said he was asleep at about 3 a.m. when he was woken up by 10 to 15 men asking him to open the gate. They entered the compound. “Many of the men were wearing black uniforms and some had the words ‘RAB’ written on their back,” he said.[216]

The men went to Kawser’s room. His wife and child were in Barisal with her parents, and two friends were sharing his room that night. One said:

Kawser came back from work at around midnight with a friend. Until about 1:30 in the morning, we were watching TV and chatting inside the room. Then we all fell asleep. Suddenly we heard someone beating very loudly at the door. I said to Kawser, “Open the door.” But he did not wake up. The other friend opened it and as soon as he opened it about eight or ten people entered the room and put on the light. Two of the men wore black clothes, and the others wore civil dress. Some had RAB vests.[217]

The witness said he saw Adnan, who had just been picked up by RAB officers.

They told Adnan to come inside. They used his name which is how I knew. The men were beating us and getting us to wake up as we were still half asleep. Adnan was in handcuffs and they were beating him, slapping him about. Then they asked Adnan, “Who is Kawser?” and he pointed him out. Then both were beaten. They were both screaming. Then the officers searched the room, and took the SIM cards from our phones. The men perhaps stayed for at most 15 minutes and then took Kawser and Adnan out of the room. They told me and Kaswer’s friend to stay inside. Later, we tried to come out, but the doors had been locked from the outside. We heard the forces beating and shouting at both of them outside.[218]

State Response

Kawser’s mother, Komla Akhter, works in a garment factory and lived in the Farmgate area of Dhaka. She said that one of Kawser’s friends informed her of his detention early in the morning. She went to the Tejgaon police station, where she stayed the whole day: “I tried to lodge a GD but the police refused to accept a complaint that mentioned RAB.”[219]

December 6: Disappearance of Munna and Jhontu

Nizam Uddin Munna, disappeared since December 6, 2013. 

© Private

On the evening of December 6, 2013, BNP student activists Nizam Uddin Munna and Tariqul Islam Jhontu were picked up by law enforcement officers at Mollartek bazaar, near Dhaka’s international airport. Their whereabouts remain unknown at time of writing.

Tariqul Islam Jhontu, disappeared since December 6, 2013.

© Private

The Pick Up

Nizam Uddin Munna, 24, was the joint secretary of the BNP student wing at Biman Bandar Thana in Dhaka. Tariqul Islam Jhontu, 28, was the joint secretary of the BNP student wing at Tejgaon College where he was studying. According to his family, Jhontu had three criminal cases lodged against him related to his political activities.

Between 9 and 9:30 p.m. on December 6, Jamal, a local businessman, was walking home after closing his shop when he saw his friend, Jhontu, in front of a laundry shop on the opposite side of the road. Jamal said he spoke briefly to Jhontu before heading home.[220] At about 10 p.m., Mohammad Joshimuddin, the laundry shop owner, was returning to his shop when he saw Jhontu being detained by men in plainclothes. He said:

I saw Jhontu handcuffed and being held by one or two men. I have known Jhontu for around seven years as he is a customer. The men holding Jhontu were in plainclothes, and I am not sure whether they had any weapons.
I walked past them without saying anything. I was very scared.[221]

Joshimuddin said that after he entered his shop, some men arrived and searched the shop. “They were asking me whether Jhontu kept anything here or not, and they searched everywhere, but did not find anything.”[222] He then saw Jhontu being bundled into a microbus parked down the road. Joshimuddin said that he did not know the contact details of Jhontu’s family, so he contacted Jamal, Jhontu’s friend who owned the shop across the street. Jamal said he informed Jhontu’s family.[223]

Nizam Uddin Munna went outside to buy medicine and vegetables at about 6:30 p.m. on the same day. Three hours later, Munna called his father, Shamsuddin, and asked him to collect the purchases from him. Shamsuddin said he witnessed his son’s arrest:

I met Munna, who gave me a small bag of vegetables and my medicine. All the shops were closed, with only roadside lights on. Then Munna received a call on his mobile. He did not answer, and instead started walking in the direction of a white large microbus, a Mitsubishi, which was standing in front of Halima Pharmacy, which was closed. When my son walked away, I was curious and walked in the same direction to see what Munna was doing. Then I saw about five plainclothes dressed men, carrying weapons, grab Munna and push him into the microbus. Seeing this, I ran toward the microbus and shouted, “Where are you taking my son?” One of the men replied, “There is an allegation against your son.” I asked the men, “Who are you?” One man replied that they were from RAB, but another replied they were from DB. The whole incident hardly took less than a minute. I was pushed away and the microbus moved away with the door open.[224]

State Response

Hasina Begum, Jhontu’s mother, said that early the next morning, Jamal, after hearing about the arrest, came and told the family that it was likely that DB had Jhontu in custody.[225] Family members then went to the laundry shop and heard what had happened the night before. Saiful Islam Mithu, Jhontu’s younger brother, went to the court assuming that Jhontu would be brought there, but he was not.[226] He also tried to file a police complaint:

On December 9, after spending the whole day in court, I went to Dokinkan police station. I wanted to mention in a GD that DB had taken my brother but the police officer on duty did not allow this. The duty officer said, “If you want to accuse a law enforcing agency of taking your brother, then you have to specify the name of the person in the DB team member who had picked him up. Otherwise you just file a GD saying that your brother is missing.” Since I had no idea about the exact identity of the people who had taken my brother I just filed a GD, stating that my brother had gone missing.[227]

Jhontu’s brother said he went to several police stations over the next few days but none had any information. He said he went to the RAB offices at least six times, but was not allowed to meet anyone.[228]

Munna’s father said he decided to go immediately to the RAB office after witnessing his son’s arrest. The guards would not let him in, but he waited outside the gates from about 10 p.m. to midnight. He said he then went to the DB office, and waited in front of the gate all night, trying to look into every vehicle that came and went. He then tried to lodge a police complaint, but was not allowed:

I approached the local police station. The duty officer told me that the police would not allow a complaint against RAB or any law enforcing agency. I was told that if I wanted to file a
GD I would have to describe that my son
went missing.[229]

December 7: Disappearance of Sujon and Farhad

Mahabub Hasan Sujon, disappeared since December 7,2013. 

© Private

On December 7, 2013, Mahabub Hasan Sujon, president of the BNP student wing in Sabujbagh Thana in Dhaka, and Kazi Farhad, president of one of its wards, were taken from a farmhouse in Sonargaon, an area just outside Dhaka. The two men had arrived there two days earlier and were planning to return the next morning. They remain disappeared.

Kazi Farhad, disappeared since December 7, 2013.

© Private

The Pick Up

Azad Md Sadequl Islam, a childhood friend of Sujon, said he received a call on December 5. Sujon, he said, was worried about being arrested, and asked if he could stay at Azad’s farmhouse in Sonargaon with his BNP friends for a few days over the weekend.[230] Azad joined them at the farmhouse but left for Dhaka in the evening of December 7, as he had work the following day. Later that night, one of his farmworkers called him
to tell him police had taken Sujon away:

I asked him if it was police, or DB, or RAB, but he couldn’t tell for sure. He said that men were in civilian clothes and had claimed to be police. He said when Sujon asked them to show the arrest papers, one of the policemen must have hit him, because the laborers heard Sujon cry out.[231]

One of the workers who witnessed the arrest said that five or six plainclothes men knocked on their door when they were sleeping:

They told us that they were police. We opened the door and they asked for Sujon. We told them that Sujon is not in our room. After that, they went to the room where Sujon was. Our room was then locked from the outside. They didn’t let us out. When they were leaving, they unlocked our door. We saw that Sujon was wearing pants so we assumed that he had changed from his lungi which he was wearing earlier.[232]

There was one later sighting of Sujon. A businessman who lived in Fakirapool close to where Sujon and Farhad rented property said that a couple of days after the two men were taken, he saw police take Sujon back to the rented property where they had lived.

I was having tea at a street stall. I saw of group of plainclothes men, some carrying guns, coming into the alley. Along with the men I saw Sujon, whom I knew as he had lived in the area. They took him to building no. 266 which was where Sujon used to live. All the men were in plainclothes except one man who wore a jacket with “DB” written on it. I saw that Sujon was handcuffed, and someone was holding his hand, directing him forward. The men stayed in the building for over an hour and came out with bags of material. Sujon was then taken to a white microbus that was parked in front of the Asma Hotel. I heard later that they had knocked down the door of the apartment where Sujon used to live.[233]

State Response

Sujon’s father, Abdul Jalil Khan, said he did not like his son’s involvement in politics. He said that his son had about 14 “political” cases lodged against him in different police stations alleging involvement in violence. He first heard from Azad that Sujon had been picked up by law enforcement authorities, and then he started looking for his son. He said:

Azad called me to say that his workers had informed him that Sujon and his colleague Farhad had been picked up by law enforcement officers. I expected that Sujon and his friends would be brought before court the next day, so my younger son went to the district court in Old Dhaka in the morning, but Sujon was not produced there.[234]

Meanwhile, Sujon’s wife and cousin went to the DB office, but they said that they had no information. A few days later the family filed a GD. Sujon’s father said:

They only allowed us to file a missing person GD, not one claiming him to be taken by law enforcement officers. The police said that we could file a case against the house owner [Azad] from where he was taken, but not against police or any other law enforcement agency.[235]

Sujon’s family received information from different sources that suggested that DB was involved with the detention. His cousin Shakil said that he went to the DB office a number of times, but received no new information. One of those times was around February 2014. Shakil said:

I met the assistant commissioner and he also denied knowledge of the incident and suggested that I should meet RAB and go and speak to Colonel Zia. He said if there is a crossfire probably RAB will know about it. He also said that if Sujon was taken by a law enforcement person, “I see very little chance that he is alive.”[236]

Farhad’s sister filed a GD at the Sabujbagh police station.[237] His wife, Farhana, said that she heard via a relative who was connected to the Prime Minister’s Office that it was DB officials that had had arrested him.[238] DB denies this.

December 12: Disappearance of Selim Reza Pintu

Selim Reza Pintu, disappeared since December 12, 2013. 

© Private

In the early morning of December 12, 2013, law enforcement officers arrested Selim Reza Pintu, secretary of the student wing of the BNP in Sutrapur, from his brother’s house in Mirpur, Dhaka. According to his family, he had a number of criminal cases against him, involving alleged vandalism. Five of his political colleagues from the area had previously been picked up on November 28, though three of them were subsequently released. He has not been seen since.

The Pick Up

The political situation and arrest of BNP supporters meant that Pintu and his wife, Tarannum Nahas, had been living in an apartment in Mirpur belonging to a relative, rather than their own in Sutrapur. On December 12, security officers came searching for Pintu in the middle of night. According to his brother, Aslam Reza Mintu, five or six men with weapons made the arrest, claiming they were from the “administration.” Tarannum Nahas, who was in the room with her husband, said Pintu realized that security forces had come for him and decided not to contest his detention:

Pintu was sleeping, and when he heard the noise he knew what was happening and opened the door to the room. As soon as he opened the door they asked whether he was Pintu. He said, “Yes, I am Pintu.” Then two of the men grabbed him. Another man entered the room and asked where were Pintu’s mobiles. He had four phones and they took two of them. The other two were in my bag. Pintu asked who the men were. They said, “We are from the administration.” He asked to see their ID cards, and they said, “It will not be a problem. You will be safe with us.” My husband did not put up any resistance.[239]

State Response

Family members went to the local police station the next morning. His sister, Rehana Banu Munni, said:

They behaved badly toward us and would not initially allow us to file a GD. They said wait for some time. The police did not want to file a GD making an allegation against law enforcement people. However, after a few days a journalist, who was a friend of my brother, came and he helped us to get a GD filed mentioning that he was taken by law enforcement officials.[240]

The GD filed on December 13 states that at 1:15 a.m. on December 12: “Some 6/7 civil dressed men came to our house and identified themselves to have the authority from the government. Then they came inside our house and took my older brother Selim Reza Pintu, 31, away with them in a gray car Dhaka Metro 5070. Afterward we looked for him everywhere in the locality but we could not find him.”[241]

Pintu’s sister visited different police stations and RAB and DB headquarters. When police set up an anti-kidnapping squad in May 2014, she submitted details of his case.[242] She subsequently met Sanwar Hossain, an additional commissioner responsible for the new squad, who told her to “be patient.” She also submitted an application to a senior RAB officer. The family did not receive any further information.

IV. Recommendations

To the Bangladesh Government

Investigations and Prosecutions

  • Promptly investigate existing allegations of enforced disappearances, locate and release those held illegally by security forces, and prosecute the perpetrators. These should include politically motivated cases involving members or supporters of the opposition Bangladesh Nationalist Party and the Jamaat-e-Islami party.
  • Investigate allegations of deaths of individuals in so-called crossfire or gunfights after they were already in security force custody, and prosecute officers responsible for these deaths.
  • Instruct police stations to accept complaints, including General Diaries and First Information Reports, from family members containing allegations against law enforcement authorities including the DB and RAB. Encourage and empower police to respond to complaints and investigate allegations of enforced disappearances.
  • Ensure serious and independent investigations by inviting the Office of the High Commissioner for Human Rights and relevant United Nations special procedures—including the Working Group on Enforced or Involuntary Disappearances, the special rapporteur on extrajudicial, summary or arbitrary executions, and the special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment—to visit Bangladesh to investigate and make appropriate recommendations to ensure justice and accountability, as well as reform of the security forces to act independently and professionally.
  • Respond speedily to various queries forwarded by the National Human Rights Commission.
  • Respond promptly to queries from the Working Group on Enforced or Involuntary Disappearances.
  • Prosecute fully law enforcement authority officers of all ranks, including those with superior authority, who are found to be responsible for enforced disappearances. Punish commanding officers and others in a position of government authority who ordered or knew of these abuses.
  • Immediately suspend, pending a full investigation, and remove from RAB, DB, and other law enforcement facilities any individual for whom there exists credible evidence that they participated in an enforced disappearance.
  • Work to disband RAB, which has been responsible for numerous and serious human rights violations, and replace with a non-military counterterrorism unit.

Protection

  • Make strong and repeated public statements at the highest government levels that make clear that all law enforcement authorities and investigation agencies should comply with the law, and that all detained people must be brought to court within 24 hours.
  • Ensure that the police, RAB, DB, and other law enforcement agencies comply with the legally mandated guidelines set out in the judgment of the Appellate Division of the Supreme Court given in May 2016.[243] In particular:
    • Ensure that a relative or friend of the detained person is informed within 12 hours of the arrest about the time and place of arrest and place of detention.[244]
    • Allow an arrested person to consult a lawyer of their choice or meet any of their nearest relations.[245]
  • Ensure that independent, qualified forensic experts examine all suspicious deaths to determine exact cause of death.
  • Establish an independent commission of inquiry to investigate all cases of disappearances and custodial deaths; ensure it is mandated to recommend cases for prosecution.
  • Ensure that people whom state authorities detain are held in known places of detention.
  • Expand the mandate of the National Human Rights Commission to ensure unfettered and unannounced access to all places of detention, as well as sufficient powers of investigation.

Law Reform

  • Ratify the International Convention for the Protection of All Persons from Enforced Disappearance, and make the requisite changes in the law.

International Cooperation

  • Agree to the multiple requests made by UN special mechanisms to visit Bangladesh to conduct investigations and make recommendations.
  • Invite the special rapporteur on torture and other cruel, inhuman or degrading treatment or punishment and the special rapporteur on extrajudicial, summary or arbitrary executions to visit Bangladesh to conduct investigations and make recommendations.
  • Ratify the Optional Protocol to the Convention against Torture and other Cruel, Inhuman or Degrading Treatment or Punishment(OPCAT).
  • Thoroughly vet all Bangladeshi military and police who apply for UN peacekeeping missions to ensure that they or the unit to which they are attached have not committed human rights violations.

To the National Human Rights Commission

  • Strenuously press the government to allow investigations into cases of disappearances and extrajudicial killings.
  • Demand that the government respond in a timely and transparent manner to requests for information on cases presented to them.
  • Call for free and unfettered access to all places of detention countrywide.
  • Call for a list of all places of detention, and ensure that detainees are not being held in secret or unknown locations.

To Bangladesh’s Bilateral and Multilateral Donors including the United States, United Kingdom, China, and India

  • Use public and private diplomacy to press the Bangladesh government to implement all recommendations made in this report.
  • Refuse to work with RAB, DB, or other law enforcement or counterterror operations until they cease enforced disappearances and extrajudicial killings, and agree to measures with both internal and external monitoring to ensure accountability for law enforcement personnel found to be involved in human rights violations.

Acknowledgments

This report was researched and written by David Bergman, a consultant with the Asia Division at Human Rights Watch. Research assistance was provided by Iqbal Mahmud. Priyanka Motaparthy, senior researcher in the Emergencies Division, provided additional input. The report was edited by Meenakshi Ganguly, South Asia director; Clive Baldwin, senior legal advisor; and Danielle Haas, senior editor in the Program Office. Tejshree Thapa, senior South Asia researcher, provided additional review. Production assistance was provided by Shayna Bauchner, Asia Division coordinator; Olivia Hunter, publications and photography associate; Fitzroy Hepkins, administrative manager; and Jose Martinez, senior publications coordinator.

We would like to thank the witnesses and families of victims who spoke to us despite fear of state retribution.

[1] David Bergman and Muktadir Rashid, “Picked up a year ago, they’re yet to return,” New Age, November 28, 2014, http://archive.newagebd.net/71268/picked-up-a-year-ago-theyre-yet-to-return (accessed November 27, 2016).

[2] See Human Rights Watch, No Right to Live: “Kneecapping” and Maiming of Detainees by Bangladesh Security Forces, September 2016, https://www.hrw.org/report/2016/09/28/no-right-live/kneecapping-and-maiming-detainees-bangladesh-security-forces; Democracy in the Crossfire: Opposition Violence and Government Abuses in the 2014 Pre- and Post- Election Period in Bangladesh, April 2014, https://www.hrw.org/report/2014/04/29/democracy-crossfire/opposition-violence-and-government-abuses-2014-pre-and-post; Blood on the Streets: The Use of Excessive Force During Bangladesh Protests, August 2013, https://www.hrw.org/report/2013/08/01/blood-streets/use-excessive-force-during-bangladesh-protests;“The Fear Never Leaves Me”: Torture, Custodial Deaths, and Unfair Trials after the 2009 Mutiny of the Bangladesh Rifles, July 2012, https://www.hrw.org/report/2012/07/04/fear-never-leaves-me/torture-custodial-deaths-and-unfair-trials-after-2009-mutiny; “Crossfire”: Continued Human Rights Abuses by Bangladesh’s Rapid Action Battalion, May 2011, https://www.hrw.org/report/2011/05/10/crossfire/continued-human-rights-abuses-bangladeshs-rapid-action-battalion; Ignoring Executions and Torture: Impunity for Bangladesh’s Security Forces, May 2009, https://www.hrw.org/report/2009/05/18/ignoring-executions-and-torture/impunity-bangladeshs-security-forces; The Torture of Tasneem Khalil: How the Bangladesh Military Abuses Its Power under the State of Emergency, February 2008, https://www.hrw.org/report/2008/02/13/torture-tasneem-khalil/how-banglad... Judge, Jury, and Executioner: Torture and Extrajudicial Killings by Bangladesh’s Elite Security Force, December 2006, https://www.hrw.org/report/2006/12/13/judge-jury-and-executioner/torture-and-extrajudicial-killings-bangladeshs-elite.

[3] For a list of those killed in Dhaka from December 10-15, 1971, see the Bangladesh International Crimes Tribunal judgment relating to these killings, The Chief Prosecutor Vs. (1) Ashrafuzzaman Khan@ Naeb Ali Khan [absconded] & (2) Chowdhury Mueen Uddin [absconded], November 3, 2012, http://www.ict-bd.org/ict2/ICT2%20judgment/CM%20&%20AK.pdf (accessed December 12, 2016).

[4] Data collated by Odhikar, a Dhaka-based human rights organization.

[5] Ibid.

[6] Hasan Jahid Tusher and M Abul Kalam Azad, “Govt cancels lease of Khaleda’s Cantt house,” The Daily Star, April 9, 2009, http://www.thedailystar.net/news-detail-83375 (accessed November 27, 2016).

[7] Shakhawat Liton and Rashidul Hasan, “Caretaker system abolished,” The Daily Star, July 1, 2009, http://www.thedailystar.net/news-detail-192303 (accessed November 27, 2016). In reversing its own demands while in opposition, the Awami League government argued that the appellate division of the Supreme Court had earlier ruled that the caretaker government provisions were unconstitutional, that the election commission was now strong enough to hold a fair election, and that the problem with a caretaker government system was that it facilitated army intervention, as had happened in 2007, resulting in a two-year period of emergency rule.

[8] “Govt goes hard on opposition,” The Daily Star, November 9, 2013, http://www.thedailystar.net/news/govt-goes-hard-on-opposition (accessed November 27, 2016). As a result of the arrests, the opposition parties extended the hartal by a day.

[9] Eighteen people were reportedly killed in election violence, in addition to attacks on minority communities perceived to be pro-government. See “Turnout low in deadliest polls,” The Daily Star, January 6, 2016, http://www.thedailystar.net/turnout-low-in-deadliest-polls-5632 (accessed December 12, 2016). See also, Human Rights Watch, Democracy in the Crossfire.

[10] For a detailed breakdown, see “Political Crisis 2015 – analysis of deaths,” Bangladesh Politico, http://bangladeshpolitico.blogspot.com/2015/01/political-crisis-2015-ana... (accessed January 17, 2017).

[11] “Political Conflict, Extremism and Criminal Justice in Bangladesh,” International Crisis Group, April 11, 2016, https://d2071andvip0wj.cloudfront.net/277-political-conflict-extremism-and-criminal-justice-in-bangladesh.pdf (accessed January 16, 2017).

[12] “Special Report: Terror Rising in Bangladesh,” Insite Blog on Terrorism and Extremism, April 26, 2016, http://news.siteintelgroup.com/blog/index.php/categories/jihad/entry/410-the-rising-tide-of-terror-in-bangladesh (accessed January 15, 2017).

[13] Joshua Hammer, “The Imperiled Bloggers of Bangladesh,” New York Times, December 29, 2015, http://www.nytimes.com/2016/01/03/magazine/the-price-of-secularism-in-bangladesh.html (accessed February 1, 2017).

[14] Rajib Haider was not only an “atheist” blogger but also an organizer of the Shahbagh protests that started in February 2013 calling for the imposition of the death penalty on those convicted by the International Crimes Tribunal of crimes committed in the 1971 independence war.

[15] Mukul Devichand, “‘Nowhere is safe’: Behind the Bangladesh blogger murders,” BBC, August 7, 2015, http://www.bbc.com/news/blogs-trending-33822674 (accessed January 21, 2017).

[16] “Special Report: Terror Rising in Bangladesh,” Insite Blog on Terrorism and Extremism, http://news.siteintelgroup.com/blog/index.php/categories/jihad/entry/410-the-rising-tide-of-terror-in-bangladesh.

[17] “Bangladesh PM Hasina smells link of BNP-Jamaat,” The Daily Star, October 5, 2017, http://www.thedailystar.net/frontpage/pm-smells-link-bnp-jamaat-152074 (accessed January 21, 2017).

[18] “Kalpana Chakma – Information, disinformation, non-information,” Amnesty International, June 14, 2014, https://www.amnesty.org/en/latest/campaigns/2014/06/kalpana-chakma-information-disinformation-non-information/ (accessed November 27, 2016).

[19] “Bangladesh: Revoke ‘Shoot at sight,’” Human Rights Watch news release, June 4, 2003, https://www.hrw.org/news/2003/06/04/bangladesh-revoke-shoot-sight.

[20] The Rapid Action Battalion (RAB) was formed in March 2004 as a composite force comprised of members from the military, police, and other law enforcement groups. Members are assigned from their parent organizations, which they return to after serving with the unit. The unit is regarded as an elite counterterrorism force and has targeted, apart from criminal suspects, alleged members of militant Islamist or left-wing groups. RAB has long been criticized for human rights violations and its failure to ensure accountability.

[21] Human Rights Watch, Judge, Jury, and Executioner.

[22] Ibid., p. 35. See, for example, the case of Sumon Ahmed Majumder killed in July 2004.

[23] “Report on 22 months of Emergency,” Odhikar, November 12, 2008, http://odhikar.org/wp-content/uploads/2012/08/22-Months-State-of-Emergency-Report-2008.pdf (accessed December 13, 2016).

[24] “Election Manifesto of Bangladesh Awami League – 2008, Bangladesh Awami League,” https://albd.org/~parbonc/index.php/en/resources/articles/4070-election-manifesto-of-bangladesh-awami-league,-9th-parliamentary-election,-2008 (accessed November 25, 2016).

[25] Human Rights Watch, “Crossfire,” pp. 3-4.

[26] “Bangladesh: Broken Promises from Government to Halt RAB Killings,” Human Rights Watch news release, May 10, 2011, https://www.hrw.org/news/2011/05/10/bangladesh-broken-promises-government-halt-rab-killings.

[27] According to Odhikar, there were 3 disappearances in 2009, 18 in 2010, 31 in 2011, 26 in 2012, 53 in 2013, 39 in 2014, and 65 in 2015.

[28] The Detective Branch (DB), short for the Detective and Criminal Intelligence Division, is a branch of different police forces around the country. See “Detective & Criminal Intelligence Division,” Dhaka Metropolitan Police, http://www.dmp.gov.bd/application/index/page/detective-criminal-division (accessed November 27, 2016). Increasingly, DB officers have been identified as being involved in disappearances and killings.

[29] “India: Protect Bangladesh War Crimes Trial Witness,” Human Rights Watch news release, May 16, 2016, https://www.hrw.org/news/2013/05/16/india-protect-bangladesh-war-crimes-trial-witness; David Bergman and Muktadir Rashid, “Anatomy of a Disappearance, and a Reappearance” The Wire, May 23, 2015, http://thewire.in/2289/anatomy-of-a-disappearance-and-a-reappearance/ (accessed November 27, 2016).

[30] “Doctor Iqbal returns to home in Lakshmipur seven months after kidnapping,” bdnews24.com, June 1, 2017, http://bdnews24.com/bangladesh/2017/06/01/kidnapped-doctor-iqbal-returns-to-home-in-lakshmipur-seven-months-after-kidnapping (accessed June 15, 2017).

[31] See, for example, “‘Missing Jamaat leader’ found dead in Jhenaidah,” The Independent, August 12, 2016, http://www.theindependentbd.com/post/55492 (accessed November 27, 2016).

[32] UN Human Rights Council, “Report of the Working Group on Enforced or Involuntary Disappearances,” A/HRC/33/51, July 28, 2016, https://documents-dds-ny.un.org/doc/UNDOC/GEN/G16/167/14/PDF/G1616714.pdf (accessed November 27, 2016), p. 19.

[33] “UN expert group urges Bangladesh to stop enforced disappearances,” United Nations news release, February 24, 2017, http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=21220&LangID=E (accessed February 28, 2017).

[34] “Exclusive: Officer exposes brutal killings by Bangladeshi Elite Police Unit RAB,” Sveridge Radio, April 4, 2017, https://sverigesradio.se/sida/artikel.aspx?programid=83&artikel=6665807 (accessed 5 May, 2017).

[35] David Bergman and Muktadir Rashid, “Picked up a year ago, they’re yet to return,” New Age, November 28, 2014, http://archive.newagebd.net/71268/picked-up-a-year-ago-theyre-yet-to-return/ (accessed November 27, 2016).

[36] “Narayanganj seven-murder sentences at a glance: 26 get death penalty,” bdnews24.com, January 16, 2017, http://bdnews24.com/bangladesh/2017/01/16/narayanganj-seven-murder-sentences-at-a-glance-26-get-death-penalty (accessed April 28, 2017).

[37] Penal Code, 1860, secs. 340, 346, 362, 365, 367, and 368, http://bdlaws.minlaw.gov.bd/print_sections_all.php?id=11 (accessed January 15, 2017).

[38] See “Review of the Torture and Custodial Death (Prohibition) Act, 2013,” BLAST, December 2015, https://www.blast.org.bd/content/publications/Review%20of%20The%20Torture%20&%20Custodial%20Death(Prevention)%20Act,%202013.pdf (accessed March, 1, 2017).

[39] Constitution of Bangladesh, art. 31, http://bdlaws.minlaw.gov.bd/pdf_part.php?id=367 (accessed December 12, 2016).

[40] Ibid., art. 32.

[41] “Guidelines for the Law Enforcement Agencies,” Bangladesh v. Bangladesh Legal Aid and Services Trust (BLAST), Civil Appeal N0.53 of 2004, May 24, 2016, http://www.supremecourt.gov.bd/resources/documents/734650_Civil_Appeal_
No_53_of_2004_final_2016.pdf
(accessed January 22, 2017), pp. 389-396.

[42] Code of Criminal Procedure, 1898, sec. 132 states: “No Prosecution against any person for any act purporting to be done under this Chapter shall be instituted in any Criminal Court, except with the sanction of the Government.”

[43] Ibid., sec. 132 (a) – (d). Armed Police Battalions Ordinance, 1979, sec. 13, as amended, states: “No Suit, prosecution or other legal proceedings shall be against any member of the Force for anything which is done or intended to be done in good faith under this Ordinance.” At the 119th meeting of the UN Human Rights Committee, the Bangladesh law minister claimed that this section did not provide any immunity to RAB officers, as it only applied in relation to acts done following orders of the government. See UN Web TV, “Consideration of Bangladesh – 119th session CCPR,” 2:22:40, March 7, 2017, http://webtv.un.org/search/consideration-of-bangladesh-contd-3340th-meeting-119th-session-of-human-rights-committee/5350733542001 (accessed March 16, 2017).

[44] Declaration on the Protection of All Persons from Enforced Disappearances, adopted December 18, 1992, G.A. res. 47/133, 47 U.N. GAOR Supp. (No. 49) at 207, U.N. Doc. A/47/49 (1992). The Bangladesh government has not signed the International Convention for the Protection of All Persons from Enforced Disappearance.

[45] International Covenant on Civil and Political Rights (ICCPR), adopted December 16, 1966, G.A. Res. 2200A (XXI), 21 U.N. GAOR Supp. (No. 16) at 52, U.N. Doc. A/6316 (1966), 999 U.N.T.S. 171, entered into force March 23, 1976. Bangladesh ratified the ICCPR in 2000, subject to reservations to arts. 10, 11, and 14.

[46] Ratified on March 23, 2010.

[47] Rome Statute of the International Criminal Court (Rome Statute), A/CONF.183/9, July 17, 1998, entered into force July 1, 2002, art. 7(1)(i).

[48] Ibid., art. 7(2)(i).

[49] Ibid., art. 8.

[50] David Bergman, “Due process and Bangladesh Counter Terrorism Measures,” The Wire, October 8, 2016, https://thewire.in/71832/due-process-bangladeshs-counter-terrorism-measures (accessed January 10, 2017).

[51] This list is based on a combination of cases documented by Odhikar and Human Rights Watch.

[52] Interviews with two colleagues of Abu Huraira, February 15, 2017. See also, “Jamaat leader picked up ‘by cops’ found dead,” Daily Observer, March 1, 2016, http://www.observerbd.com/2016/03/01/139188.php (accessed January 15, 2017).

[53] “Now confusion over arrest of Mukul’s relative,” The Daily Star, June 22, 2016, http://www.thedailystar.net/frontpage/confusion-over-arrest-mukuls-brother-law-1243570 (accessed January 15, 2017).

[54] “2 Shibir leaders detained weeks ago killed in ‘gunfight,’” New Age, July 2, 2016, http://archive.newagebd.net/238630/2-shibir-leaders-detained-weeks-ago-killed-gunfight/ (accessed January 15, 2016).

[55] Telephone interviews with Sabdar Rahman, Anisur’s father, and Sharifur Rahman, Anisur’s brother, January 26, 2017.

[56] “Another Shibir man killed in Gunfight,” New Age, July 3, 2016, http://newagebd.net/238813/another-shibir-man-killed-gunfight/ (accessed January 15, 2016).

[57] “2 suspects in Mitu murder case killed,” The Daily Star, July 10, 2016, http://www.thedailystar.net/backpage/2-suspects-mitu-murder-case-killed-1251382 (accessed January 15, 2016).

[58] “‘Abducted’ man killed in ‘gunfight’,” The Daily Star, July 3, 2016, http://www.thedailystar.net/country/abducted-man-killed-gunfight-1249405 (accessed January 15, 2016).

[59] Telephone interview with family members. See also, “Two ‘Jamaat men’ killed in Jhenaidah ‘gunfight’,” New Age, October 25, 2016, http://www.newagebd.net/article/1417/two-killed-in-jhenaidah-gunfight (accessed January 15, 2017).

[60] Telephone interview with Mahfuza Khanum, Shajib’s mother, February 15, 2017.

[61] “Suspected criminal found in Joypurhat ‘gunfight’,” Daily Observer, October 26, 2016, http://www.observerbd.com/details.php?id=40243 (accessed January 15, 2017).