(New York) – The latest revisions to China’s Criminal Law impose up to seven years in prison for “spreading rumors” about disasters, Human Rights Watch said today. The revised law, which took effect November 1, 2015, does not clarify what constitutes a “rumor,” heightening concerns that the provision will be used to curtail freedom of speech, particularly on the Internet.

“The revised Criminal Law adds a potent weapon to the Chinese government’s arsenal of punishments against netizens, including those who simply share information that departs from the official version of events,” said Sophie Richardson, China director at Human Rights Watch. “The authorities are once again criminalizing free speech on the Internet, which has been the Chinese people’s only relatively free avenue for expressing themselves.”

The National People’s Congress Standing Committee approved the addition of a provision to article 291(1) of the Criminal Law (Criminal Law Amendment Act (9)), which states that whoever “fabricates or deliberately spreads on media, including on the Internet, false information regarding dangerous situations, the spread of diseases, disasters and police information, and who seriously disturb social order” would face prison sentences – with a maximum of seven years for those whose rumors result in “serious consequences.” The vagueness of the provision means that individuals doing nothing more than asking questions or reposting information online about reported local disasters could be subject to prosecution.

In the past, the Chinese government has detained netizens who questioned official casualty figures or who had published alternative information about disasters ranging from SARS in 2003 to the Tianjin chemical blast in 2015, under the guise of preventing “rumors.”

The revision was made in the context of a wider effort to rein in online freedom since President Xi Jinping came to power in 2013:

  • In August 2013, the authorities waged a campaign against “online rumors” that included warning Internet users against breaching “seven bottom lines” in their Internet postings, taking into custody the well-known online commentator Charles Xue, and closing popular “public accounts” on the social media platform “WeChat” that report and comment on current affairs;
  • In September 2013, the Supreme People’s Court and the Supreme People’s Procuratorate (the state prosecution) issued a judicial interpretation making the crimes of defamation, creating disturbances, illegal business operations, and extortion applicable to expressions in cyberspace. The first netizen who was criminally prosecuted after this took effect was well-known blogger Qin Huohuo, who was sentenced to three years in prison in April 2014 for allegedly defaming the government and celebrities by questioning whether they were corrupt or engaged in other dishonest behavior;
  • In July and August 2014, authorities suspended popular foreign instant messaging services, including KakaoTalk, claiming the service was being used for “distributing terrorism-related information”;
  • In 2015, government agencies such as the State Internet Information Office issued multiple new directives, including tightening restrictions over the use of usernames and avatars, and requiring writers of online literature in particular to register with their real names;
  • In 2015, the government has also shut down or restricted access to Virtual Private Networks (VPNs), which many users depend on to access content blocked to users inside the country and also help shield user privacy;
  • In March 2015, authorities also deployed a new cyber weapon, the “Great Cannon,” to disrupt the services of GreatFire.org, an organization that works to document China’s censorship and facilitate access to information;
  • In July 2015, the government published a draft cybersecurity law that will requires domestic and foreign Internet companies to increase censorship on the government’s behalf, register users’ real names, localize data, and aid government surveillance; and
  • In August 2015, the government announced that it would station police in major Internet companies to more effectively prevent “spreading rumors” online.
     

Activists in China are regularly prosecuted for speech-related “crimes,” Human Rights Watch said. The best known of these crimes is “inciting subversion,” which carries a maximum of 15 years in prison. But authorities have also used other crimes such as “inciting ethnic hatred,” as in the case of human rights lawyer Pu Zhiqiang, who has been detained since May 2014 for a number of social media posts questioning the government’s policies towards Uighurs and Tibetans.

While providing the public with accurate information during disasters is important, the best way to counter inaccurate information would be to ensure that official information is reliable and transparent, Human Rights Watch said.

Above all, journalists should have unimpeded access to investigate and inform the public about these events, and the wider public should have the freedom to debate and discuss disaster response.

“The casualties of China’s new provision would not be limited to journalists, activists and netizens, but the right of ordinary people and the world to know about crucial developments in China,” Richardson said. “The best way to dispel false rumors would be to allow, not curtail, free expression.”

Posted: January 1, 1970, 12:00 am

Protesters chant slogans to mourn the death of Nobel laureate Liu Xiaobo, outside China's Liaison Office in Hong Kong, China on July 15, 2017. 

© 2017 Bobby Yip/Reuters

(New York) – The Chinese government should immediately and unconditionally release from detention rights activist Huang Qi and bookseller Yiu Mantin, who are seriously ill, Human Rights Watch said today. Authorities should also allow the two, who have been held in violation of their basic rights, to seek proper treatment wherever they wish, in China or abroad.

In recent years, a number of prominent dissidents have become seriously ill in detention, been denied adequate care, and died either in detention or shortly after being released. On November 7, 2017, dissident writer Yang Tongyan died less than three months after being released on medical parole, and on July 13, Nobel Peace Laureate Liu Xiaobo died three weeks after he was transferred to a hospital.

“Neither of these peaceful advocates should have been detained in the first place, and to continue to do so even when they are gravely ill is cruel and inhumane,” said Sophie Richardson, China director. “Authorities should immediately release Huang Qi and Yiu Mantin and allow them to seek medical care freely.” 

The considerable reputational damage brought by the death of Nobel Peace laureate Liu Xiaobo in state custody just months ago has not deterred Chinese authorities from keeping seriously ill dissidents in prison.

Sophie Richardson

China Director

Huang, 54, a veteran activist and founder of the human rights website 64 Tianwang, has been detained since November 2016 for “illegally leaking state secrets abroad.” Huang suffers from several health conditions for which he was not given adequate treatment, including possible imminent kidney failure, signs of emphysema and inflammation in the lungs, Huang’s mother said in a public letter appealing for Huang’s release. Huang’s lawyer has applied for medical parole on his behalf three times, but authorities denied each application without giving a reason. In November, Huang told his lawyer that he had been repeatedly beaten by fellow detainees at the Mianyang City Detention Center. At least one officer at the center was aware of the violence but failed to intervene to stop it. Huang was also denied basic necessities such as toothpaste and toilet paper. Huang was previously imprisoned from 2000-2005 on subversion charges and from 2008-2011 for “illegally holding state secrets.”

Yiu, 76, a Hong Kong publisher and chief editor of Morning Bell Press, has been serving a 10-year sentence on smuggling charges in a Guangdong jail since October 2013. Yiu was preparing to publish a book critical of Chinese President Xi Jinping shortly before he was arrested. Yiu suffers from heart disease, liver disease, asthma, and other health issues. He has fainted several times since being detained. Prison authorities transferred Yiu to a prison-affiliated hospital about two years ago due to his poor health. Yiu’s wife said prison authorities had not given her any medical examination records about Yin since 2015 and she is uncertain about his condition. Yiu’s lawyer has repeatedly sought medical parole for him but it has not been granted.

Conditions in China’s detention facilities and prisons are poor and usually marked by minimal nutrition and rudimentary health care. Human Rights Watch has also long documented police torture and ill-treatment of detainees in police-run facilities. There have been repeated instances where seriously ill detainees were not sent to hospitals until their conditions had deteriorated significantly.

Failure to provide prisoners access to adequate medical care violates the right to the highest attainable standard of health found in international human rights law. The UN Standard Minimum Rules on the Treatment of Prisoners provides that “[s]ick prisoners who require specialist treatment shall be transferred to specialized institutions or to civil hospitals.” China’s Criminal Procedure Law stipulates that medical parole can be granted to criminal offenders who are “seriously ill,” but in practice, authorities have rarely granted it to political dissidents.

Since President Xi Jinping assumed power in 2013, several dissidents and activists have been denied adequate medical treatment and died in detention or shortly after being released. They include:

  • Cao Shunli: In March 2014, Cao Shunli, 52, an activist who had tried to participate in China’s Universal Periodic Review, a process run by the United Nations Human Rights Council, died in a Beijing hospital after being arbitrarily detained in September 2013. Her family members had repeatedly warned that she was becoming gravely ill and had fought to have her released on medical parole, but authorities only transferred her when she fell into a coma. She died days later.
  • Goshul Lobsang: Tibetan activist Goshul Lobsang, 42, died in March 2014, five months after being released on medical parole. After his arrest in June 2010, Goshul Lobsang was sentenced to 12 years in prison on charges relating to the 2008 protests in Tibet. During his three years in detention, Goshul Lobsang was reportedly subjected to severe torture and deprived of sleep and food.
  • Tenzin Choedak: In December 2014, Tibetan environmental activist Tenzin Choedak, 33, died in a Lhasa hospital, three days after he was released in extremely weak condition. Tenzin Choedak had been sentenced to 15 years in prison in 2008 on the charge of acting as a ringleader during the unrest in Tibet earlier that year. While in prison, Tenzin Choedak reportedly suffered chronic diseases and brain injury because of severe torture.
  • Tenzin Delek Rinpoche: In July 2015, Tenzin Delek Rinpoche, 65, a revered Tibetan lama who was serving a life sentence for “inciting separation of the state” following a trial that fell far short of international standards, died in detention after months of increasingly serious allegations that his health was deteriorating. Throughout his 13 years in detention, credible reports repeatedly emerged that Tenzin Delek Rinpoche was being tortured.
  • Zhang Liumao: In November 2015, activist Zhang Liumao, 43, died at the Guangzhou No. 3 Detention Center after he was arrested three months earlier on suspicion of “picking quarrels and proving trouble,” a catch-all charge frequently leveled against activists. The state media reported that Zhang died of complications from cancer, but Zhang’s family lawyer, who examined Zhang’s body, said that it was bruised and bloody with apparent signs of torture.
  • Liu Xiaobo: In July 2017, after serving nearly nine years of his 11-year prison sentence for “inciting subversion,” Nobel Peace laureate and public intellectual Liu Xiaobo died from liver cancer in a Shenyang hospital. Less than a month before his death, the authorities said they had “released” him on medical parole, but they heavily guarded him and his wife, Liu Xia, isolating them from family and supporters, and denied Liu’s request to seek treatment outside the country. Very little is known about the conditions of Liu’s imprisonment. Although the authorities allowed his closest family, including Liu Xia, some visits, they silenced the family by holding Liu Xia under house arrest.
  • Yang Tongyan (pen name: Yang Tianshui): Dissident writer Yang Tongyan, 56, was released on medical parole after being diagnosed with a brain tumor in August 2017, four months short of serving the full term of a 12-year prison sentence for “inciting subversion of state power.” After being denied permission to travel abroad for treatment, Yang died on November 7, less than three months after his release. During Yang’s imprisonment, his lawyers had applied for his medical parole several times, but they were all denied.

“The considerable reputational damage brought by the death of Nobel Peace laureate Liu Xiaobo in state custody just months ago has not deterred Chinese authorities from keeping seriously ill dissidents in prison,” Richardson said. “The ruthlessness and arrogance of the Chinese government should be met with international condemnation.”
 

Posted: January 1, 1970, 12:00 am

A 16-year-old worker harvests tobacco on a farm in Kentucky.

© 2013 Marcus Bleasdale/VII for Human Rights Watch
Working on child labor, it often feels like there isn’t much good news. So when I learned recently about a new policy that could potentially protect millions of children from dangerous work on tobacco farms around the world, I couldn’t quite believe it. With a major change to an industry-wide due diligence program, the Sustainable Tobacco Program (STP), now at least 180 tobacco companies are pledging to prohibit all children under 18 from handling green tobacco on farms in their supply chains.

The STP is used by major multinational manufacturers and leaf dealers as well as other tobacco companies operating in 52 countries, which combined are contracting with hundreds of thousands of farms worldwide.

Why is this potentially great news for kids? My Human Rights Watch colleagues and I have interviewed hundreds of children and their families working in tobacco farming in five countries: Kazakhstan, the United States, Brazil, Indonesia, and Zimbabwe. We have consistently found that many children who handle tobacco are at serious risk of nicotine poisoning, also known as Green Tobacco Sickness, an illness caused by absorption of nicotine through the skin, which can cause vomiting, nausea, dizziness, headaches, loss of appetite, and insomnia. The long-term effects of absorbing nicotine through the skin are unknown; the dangers of nicotine exposure through smoking are well-known and serious.

When we started looking into the dangers for children in tobacco farming, the companies’ approaches to hazardous work for children varied widely, and no company prohibited children from handling green tobacco.

Since 2014, we have called on tobacco companies to prohibit all children from work where they handle tobacco, including dried tobacco, which still contains nicotine. We have spoken to dozens of children – and adults – who faced health problems, such as respiratory issues, when sorting or preparing dried tobacco leaf for selling.

While companies haven’t yet gone far enough in implementing this ban on children working with tobacco, the new requirements could protect millions of children from nicotine poisoning. The policy first came into effect in the most recent tobacco-growing season, so its actual impact is unknown. Training, implementation, and monitoring in a complex global supply chain will be challenging, but achievable. As we continue to investigate conditions for child tobacco workers around the world, I hope my colleagues and I will see this as a real step to ending hazardous child labor.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

Lebanon is once again staring down a waste management crisis, with news that the Costa Brava and Bourj Hamoud landfills will reach capacity in 2018—two years before the government’s initial estimate of 2020. In response, the cabinet is reportedly considering a proposal to reopen the infamous Naameh landfill, whose closure in 2015 sparked a crisis that left garbage piling up in the streets of Beirut.

Garbage is piled near a highway in Beirut, Lebanon January 19, 2016.

© 2017 Reuters

The government’s solution to that crisis was a temporary fix, adopted in March 2016, to dump waste from Beirut and Mount Lebanon in two new coastal landfills, in Bourj Hammoud and Costa Brava. Now that these landfills are filling up faster than expected, the government is discussing yet another emergency solution. 

The government never solved the waste management problem—it just pushed the garbage out of sight. The 2016 fix was just another short-term emergency measure, the latest in a string of emergency plans adopted after the end of the civil war in 1990.

The new landfills have been plagued by controversy and lawsuits since their inception. The Environment Ministry said that neither landfill had an environmental impact assessment, so it remains unclear what impact they will have on the local environment, and on people living nearby. Garbage at the Costa Brava site, located near the airport, attracted birds that became a threat to planes and hence public safety. At the Bourj Hammoud dump, videos have shown trucks dumping garbage directly into the sea, and local fishermen have protested the amount of garbage they are now catching in their nets.

Meanwhile, outside of Beirut and Mount Lebanon, the situation is even worse, but gets far less attention.

Lebanon’s garbage crisis didn’t really start in 2015—that’s just the year it reached Beirut and Mount Lebanon, the wealthier parts of the country.

Lebanon has never had a comprehensive waste management system that covers the entire country. While the central government contracted the companies Sukleen and Sukomi to manage solid waste for most of Beirut and Mount Lebanon under a 1997 emergency plan, municipalities in the rest of the country have been left largely to their own devices, without the resources or expertise to adequately manage their waste.

As a result, hundreds of open dumps have sprung up across Lebanon, many of which are being burned on a regular basis. But burning is not just a nuisance. It triggers Lebanon’s obligations under international law.

The right to health implications of this open burning of waste are the subject of a forthcoming Human Rights Watch report. Over the course of research, I’ve spoken with families who live close to open dumps that burned continuously for years. Many told me they have respiratory illnesses, that the smoke has at times driven them from their homes, and that they live in constant fear of the long-term health impact on them and their children. Doctors treating these residents said they believed burning was causing respiratory illnesses and that it could take years for the long-term effects to become clear—including, for example on the incidence of cancer. Meanwhile, researchers at the American University of Beirut found that burning waste during the 2015 crisis released dangerous particles in Beirut and Mount Lebanon, with potentially severe health effects.

The garbage crisis and burning of waste are symptoms of the larger problem in Lebanon—a failure for decades to develop and carry out a long term national waste management plan that is based on public health principles and environmentally sound.

It is well past time for Lebanon to move past these temporary emergency plans that only cover part of the country and simply push the problem down the road. With parliamentary elections coming up in 2018, Lebanon’s citizens should demand real plans and real solutions.

Fortunately, unlike some of the other challenges in Lebanon, there are clear solutions to waste management. About 90 percent Lebanon’s solid waste is made up of materials that could be composted or recycled. But only about 8 percent is being recycled and 15 percent composted. The rest is being landfilled, dumped, or burned. Yet the government has not even taken the basic step of providing a convenient recycling option in Beirut.

Researchers have already put together proposals for what a sustainable solid waste management plan, informed by public health principles, might look like. And environmental organizations such as Cedar Environmental and Terre Liban have already shown that it is possible to apply sustainable waste management practices in Lebanon. But the government has so far seemed incapable of adopting and carrying out a cohesive solution to this.

With yet another crisis looming, the government urgently needs to end this reliance on short-term emergency plans. It should finally adopt a sustainable solution that respects the health and environmental rights of its citizens.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

An aerial photo showing the site of a mass shooting at the First Baptist Church of Sutherland Springs, Texas, U.S., November 6, 2017. 

© 2017 Reuters

After the horrific event of a mass shooting in the US, it takes time for details of the perpetrator to emerge. But without fail, their violent criminal record, any ties to radical extremism, the legality of weapons they used, and their mental health history are the first things scrutinized by the media, policy makers, and the general public.

However, one of these details is not like the others – mental health histories should not be linked to a propensity to commit a mass shooting. There is no evidence that indicates a person with a mental health condition is any more likely to participate in senseless violence than anyone else. In fact, people with mental health conditions are more than 10 times more likely to be victims of violent crime than the general population.

It is not yet clear whether the perpetrators of the massacres in Las Vegas last month and in Sutherland Springs this week had mental health conditions, and while the Texas shooter spent time in a behavioral facility following assault charges, to blame his long history of violence on a mental health condition would be reductive. And yet President Donald Trump described the cause of Sunday’s tragedy as a “mental health problem,” ignoring the myriad issues that have stronger correlations to gun violence. For example, more than 50 percent of people who commit mass shootings have a history of domestic violence. Yet mental health history is cited much more often.

Instead of thoughtlessly blaming mental health conditions for every act of mass violence, we should look at the facts: the use of a gun by someone with mental health condition is more likely to result in suicide than assault.

Scapegoating people who are already stigmatized based on their mental health won’t end gun violence. While solutions to stopping mass shootings are long overdue, real progress won’t come at the cost of perpetuating false stigma, fear, and unfounded discrimination against people with disabilities.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

California State Capitol Building. On October 15, 2017, California Governor, Jerry Brown, signed the Gender Recognition Act into law. 

©2012 Asilvero/Wikimedia

The Gender Recognition Act, which Gov. Jerry Brown signed into law on Oct. 15, puts California in the lead nationally in legal recognition for nonbinary genders. The bill opens the door for additional regulation that will protect the hundreds of intersex babies born in the state each year.

The new law allows the designation of a third gender on birth certificates. It notes that “‘intersex’ is an umbrella term used to describe natural bodily variations, which can include external genitalia, internal sex organs, chromosomes, or hormonal differences that transcend typical ideas of male and female” and that as many as 1.7 percent of people have an intersex trait.

Once called “hermaphrodites” — a term now considered pejorative and outdated — intersex people are not rare, although their medical needs are widely misunderstood. Based on a medical theory popularized in the 1960s at Johns Hopkins, a small subset of doctors continue to perform surgery on intersex children — often in infancy — with the stated aim of making it easier for them to grow up “normal.” But as clinical data and our recent research for Human Rights Watch showed, the results are often catastrophic, the supposed benefits are largely unproven, and these babies are usually born perfectly healthy, meaning there are rarely urgent health considerations requiring immediate, irreversible intervention.

One of the many risks of surgery is assigning the wrong sex, which the new California law addresses by allowing people to change their birth certificates without undergoing any medical procedures.

But there are other risks, too — including incontinence, scarring, lack of sensation, and psychological trauma. Nerves that are severed cannot regrow, scar tissue can limit options for future surgery, and the removal of gonads in an infant means that the child requires lifelong hormone replacement therapy to grow and stay healthy.

Patient advocates have worked with the medical community for 25 years to develop standards of care — but the medical establishment, despite a decades-long controversy and some brave physician voices, has by and large failed to regulate the practice. Gender clinics in California and around the country understand that transgender children often greatly benefit from counseling prior to reversible interventions, only offering surgery as an option when they come of age. But in many cases, these same clinics are conducting sex assignment surgery on intersex children before they can even speak or stand.

California’s new law reflects this reality, noting that “some children born with intersex traits have been subjected to involuntary and medically unnecessary surgical procedures in infancy in an attempt to erase aspects of their natural bodies, causing significant physical and psychological harm.”

The next step is for authorities to step in and draw a hard line, with regulations, so that absent medical necessity, no surgery on the gonads, internal, or external sex organs of an intersex child will be performed until that person is old enough to understand the risks and benefits, and provide informed consent. Some advocates have argued that existing federal and state laws banning female genital mutilation, or statutes forbidding sterilization of a minor without demonstrated medical necessity, could be used to regulate some of these surgeries. There are also questions of why insurers are paying for procedures that have no proven medical benefits, and that U.N. human rights experts say amounts in some cases to a form of ill-treatment or torture.

U.N. child and health-rights experts, the World Health Organization, Amnesty International, Human Rights Watch, Physicians for Human Rights, major American lesbian, gay, bisexual and transgender legal groups, three former U.S. surgeons-general, the American Medical Association Board of Trustees, and the largest U.S. support group for intersex children have all called for an end to medically unnecessary nonconsensual surgery on intersex children.

California has taken a positive step by introducing a third option on birth certificates. The authorities should take the next obvious step and guarantee intersex children the chance to grow unharmed by those who are entrusted with keeping them healthy.

Author: Human Rights Watch, Human Rights Watch
Posted: January 1, 1970, 12:00 am

Turks Head Surgery Center, where urologist Dr. Ilene Wong spoke to Human Rights Watch about shortcomings in providing care to patients with differences in sex development (DSD) and their families. The North American Society for Pediatric and Adolescent Gynecology also expressed concern about DSD care in a new position statement released in November 2017. 

©2017 Human Rights Watch.

(New York, November 8, 2017) – A new position statement by the North American Society for Pediatric and Adolescent Gynecology represents a significant step toward ending medically unnecessary surgery on intersex children who are too young to consent, Human Rights Watch and interACT Advocates for Intersex Youth said today. The statement urged respect for the autonomy of intersex children and for their active participation in decisions about surgical procedures. The statement was endorsed by the Pediatric Endocrine Society, another major medical professional association. 

Since the 1960s, doctors in the United States and around the world have routinely performed surgery on intersex infants and children – born with chromosomes, gonads, or genitalia that do not correspond to traditional notions of “male” or “female” – to assign them a sex or “normalize” their bodies. These surgeries on children with intersex traits (sometimes called Differences of Sex Development or DSD) are medically unnecessary, irreversible, often traumatizing, and carry a risk of lifelong harm.

“Endocrinologists and gynecologists are critical to intersex health care, and their support for an end to unnecessary and high-risk surgery on children too young to consent is a major step,” said Kimberly Zieselman, executive director of interACT. “These children and their families need psycho-social and peer support, and lifelong expert health care – not early unnecessary surgeries that irrevocably impact their sexual and reproductive function.”

The position statement reads:

We believe in respecting the autonomy of the individual patient as well as providing ample support and guidance for the patient and family. All parents and affected patients should be actively encouraged to seek psychological counseling and peer support given the stress, confusion, and isolation that many experience. We believe that surgery alone does not address all the implications associated with DSD conditions. Some DSD conditions require early surgical intervention to optimize health and fertility. Ideally, if surgical interventions could be safely delayed, patients would have time to express their gender identity and to be actively involved in the decision making process. True informed consent or assent includes an accurate discussion of the options, benefits, known short and long term complications, expected pain and recovery, as well as need for reoperation. Finally, we believe that if there is a possibility for fertility, that this should be preserved and optimized.

Despite decades of controversy, doctors in the US and around the world continue to operate on intersex children’s gonads, internal sex organs, and genitals when the children are too young to participate in the decision. The results are often catastrophic and the supposed benefits largely unproven. While certain surgical interventions on intersex children are undisputedly medically necessary, some surgeons perform risky and medically unnecessary cosmetic surgery on intersex children, often before they are even able to talk.

Medical protocols have evolved over the past two decades. The use of multi-disciplinary teams, including endocrinologists, gynecologists, urologists, and psychologists to work on intersex (or DSD) cases is increasingly common. However, the field remains fraught with uneven, inadequate, and piecemeal standards of care. The position statement from the North American Society for Pediatric and Adolescent Gynecology and the support from the Pediatric Endocrine Society is an important standard-setting step, Human Rights Watch and interACT said.

Medically unnecessary surgery on intersex children has been condemned by the World Health Organization, the American Medical Association board of trustees, three former US surgeons-general (including one who was a pediatric endocrinologist), Physicians for Human Rights, the AIS-DSD Support Group (the largest US community support group for people and families affected by intersex conditions), Amnesty International, United Nations experts on children’s, disability, women’s, and health rights, Lambda Legal, the ACLU LGBT Rights Project, Human Rights Watch, and intersex-led organizations around the world.

“Clear support for shared decision-making about surgery between doctors and intersex people themselves, as these two top pediatric medical associations have now endorsed, is the path forward for modern medicine,” said Kyle Knight, researcher at Human Rights Watch. “Deferring medically unnecessary surgery, as recommended by every human rights organization to have considered this issue, should be the norm rather than the exception for intersex children.”

Posted: January 1, 1970, 12:00 am

Police tape surrounds the Rehabilitation Center at Hollywood Hills in Hollywood, Florida, U.S., September 13, 2017.

© 2017 Reuters

A month ago, eight people died in sweltering heat in a Florida nursing home after Hurricane Irma knocked out the air conditioning. Backup generators could have prevented this tragedy, but despite Florida’s proneness to extreme weather, the facility, The Rehabilitation Center at Hollywood Hills, did not have the backup power to keep air conditioners going. Recently released 911 tapes detailed how staff desperately sought outside help as residents stopped breathing or had heart attacks.

This never should have happened. In the aftermath, Governor Rick Scott of Florida issued an emergency regulation requiring nursing facilities to have a generator and enough fuel to cool their buildings for four days.

Next month, new federal regulations protecting residents at nursing homes that accept Medicare and Medicaid payments are scheduled to go into effect. Among other things, they require nursing homes to plan for emergencies. But now it is unclear when or even if these regulations will go into effect.

In a letter sent recently, 120 members of the House of Representatives called on the US Department of Health and Human Services to put the new rules on hold for one year. A similar letter was sent from Senators last week. Echoing a longstanding nursing facility industry talking point, the House letter claims that the new regulations are unnecessary because, “providers…already have developed procedures and guidelines.” This is an indefensible position.

Voluntary, industry-led mechanisms have their place but are never an adequate substitute for oversight and regulation. This is particularly true of the nursing home industry, where bad conduct by companies can put the welfare, and even the lives of extremely vulnerable people, at risk. Whatever substantive concerns legislators might have with the new regulations, the idea that there is no need for strong government regulation to protect nursing home residents should not even be a part of the conversation.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

US President Donald Trump signs a presidential public health emergency declaration on the nation's opioid crisis in the East Room of the White House in Washington, DC.

© 2017 REUTERS/Carlos Barria

US President Donald Trump has declared the opioid crisis a public health emergency. What that means in practice remains to be seen – possibilities include increased federal funding, inter-agency coordination, and improved rural health services. But one prerequisite to making real progress in stopping the 142 deaths that happen each day in the US from drug overdose, as well as the economic loss related to such high addiction rates, is ending the White House and the Republican Party’s war on the Affordable Care Act (ACA) and Medicaid.

The Mental Health Parity and Addiction Equity Act requires insurers, both public and private, to insure most mental and behavioral health services on an equal footing with other medical conditions. The ACA strengthens that mandate in numerous ways, such as making mental health care an “essential health benefit” that must be included in private insurance plans on the exchanges. Along with the expansion of Medicaid in 32 states under the ACA, these provisions form a foundation that is absolutely essential to addressing the opioid epidemic simply by increasing access to treatment for drug dependence.

Currently, more than 20 million adults are suffering from substance abuse. Yet fewer than 12 percent are receiving treatment. Under Medicaid expansion alone, 1.2 million people who were previously uninsured have gained access to drug treatment. If the remaining states expanded Medicaid, it is estimated that another 1.1 million people who are addicted to drugs would gain access to drug treatment.

The White House and some Congressional leaders, however, continue to undermine the ACA and are proposing devastating cuts to Medicaid. Trump’s recent executive order permits alternative health care plans to not be subject to ACA regulations like the mental health parity mandate. The Senate budget resolution proposes massive cuts to health care including a 1.3 trillion dollar cut in Medicaid by 2027. Trump said “This can be the generation that ends the opioid epidemic.” But without access to health services, including drug treatment, this goal will never be realized.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

On his first full day in office, US President Donald Trump issued an expanded “Global Gag Rule,” or “Mexico City Policy,” which strips foreign nongovernmental organizations of all US health funding if they use funds from any source to offer information about abortions, provide abortions, or advocate liberalizing abortion laws.

(Washington, DC) – Early effects of United States restrictions to global health aid include cuts to essential health services in Kenya and Uganda, Human Rights Watch said in a letter to US Secretary of State Rex Tillerson that was released today. The changes have resulted in a loss of training and equipment from nongovernmental groups for government health clinics, and widespread confusion about implementation. Human Rights Watch sent its findings in advance of a six-month review by the State Department of these funding restrictions.

On January 23, 2017, US President Donald Trump issued an expanded “Mexico City Policy,” later renamed the “Protecting Life in Global Health Assistance” policy. The policy requires foreign nongovernmental organizations receiving US global health aid to certify they do not use their own, non-US funds to provide abortions except in cases of rape, incest, or to save a woman’s life. If they wish to keep their US funding, the groups also cannot offer information or referrals for abortion – even where abortions are legal – or advocate liberalizing abortion laws. This policy is widely known as the “Global Gag Rule” because it restricts the type of information organizations can provide even with their own funds from non-US sources, including restricting what a doctor can say to her patient. US law already prohibits using US funds for abortion in foreign family planning assistance.

“Our research shows that the expanded Mexico City Policy is already erecting barriers that will block people in Kenya and Uganda from the health care they need,” said Skye Wheeler, women’s rights emergencies researcher at Human Rights Watch.

“Because the US is the world’s largest health donor, this indefensible change in policy puts the lives of many women and girls at risk.”

Previous Republican administrations have consistently enacted versions of the Mexico City Policy, and these affected US family planning funds, approximately US$575 million in FY2016. The Trump administration’s policy extends the restrictions to an estimated $8.8 billion in US global health assistance, including for family planning and reproductive health, maternal and child health, nutrition, malaria, tuberculosis, infectious diseases, neglected tropical diseases, water, sanitation, and hygiene programs, and HIV/AIDS – including the President's Emergency Plan for AIDS Relief (PEPFAR).

In July, Human Rights Watch interviewed representatives of 24 organizations in Kenya and 21 in Uganda affected by the funding restrictions. These organizations provide reproductive and HIV health services, conduct health outreach to marginalized populations, or advocate for improved health policies.

A woman walks past a mural on a Family Health Options clinic in the Kibera slums in Nairobi, Kenya, May 16, 2017. © 2017 Reuters

Kenya and Uganda both rely heavily on US health funds to combat high maternal mortality rates and the HIV/AIDS epidemic. In Kenya, maternal deaths account for 14 percent of deaths of women ages 15 to 49, and it is among the six countries with the highest total number of HIV infections in the world. US global health funds pay for anti-retroviral treatment for 890,000 Ugandans with HIV, about 93 percent of the people receiving HIV treatment in the country. The Ugandan government has estimated that unsafe abortions contribute to 8 percent of maternal deaths.

Human Rights Watch found the policy has triggered reductions in key sexual and reproductive health services from well-established organizations that cannot easily be replaced. For example, Family Health Options Kenya (FHOK) runs 16 healthcare facilities in the country. FHOK representatives told us the organization will not comply with the restrictions and therefore will lose US funds, which make up roughly 60 percent of its budget, and that it may have to cut as many as half of its services. The organization has already closed one clinic and canceled 100 planned outreach events, including for cervical cancer screening, HIV testing, and family planning counseling, that typically reach 100 people each time.

“Many of the groups that now stand to lose their funding have long and strong track records and are among the best placed and qualified to do the work,” Wheeler said. “In many cases, alternatives with comparable infrastructure, expertise, and community relationships simply do not exist.”

Although governments receiving US funds are exempt from the policy, Human Rights Watch found that in Kenya and Uganda, many government health clinics will be indirectly weakened. Many depend on nongovernmental groups for training and equipment to provide safe abortion care, including in cases of rape or incest, or to save a woman’s life. Groups interviewed said they doubt these government clinics will have the capacity to continue providing comprehensive safe abortion care without their support.

Many of the healthcare providers said they feared an increase in unsafe abortions and associated maternal deaths as a result of the cuts in services, reductions in referrals, reduced capacity of government clinics, and uncertainty about whether needed materials and equipment will be available.

As the US government embarks upon a six-month review of the policy’s impacts, Human Rights Watch said that six months is not long enough to sufficiently assess this. Many organizations have not yet signed new grants or renewals and have not yet had to cut or shift their programs. This is the case for many groups receiving PEPFAR funds to prevent and treat HIV, a large proportion of US global health funds. Interviews with sex worker organizations that have come up for funding renewal illustrated that they had to make cruel programmatic choices, including choosing between funds for lifesaving antiretroviral therapy for their members or lifesaving reproductive health services.

“These donor-imposed restrictions undermine hard-won relationships of trust developed with a key population on the front lines of efforts to fight HIV,” Wheeler said.

The majority of people interviewed said they had not received any direct communications or explanations of the policy from US government grant administrators. In a letter to Human Rights Watch, USAID said that it has trained its staff, published the policy on its website, and created an online course.

However, organizations interviewed had many questions about the scope and implementation of the policy; and about access to US government-funded equipment and supplies. They also had questions about whether groups that comply with the policy could partner and meet with groups that do not. In the absence of more detailed guidance, some organizations appeared to have interpreted the policy’s restrictions too broadly – for example, feeling they should avoid community outreach on the risks of unsafe abortion.

“President Trump should rescind this devastating policy, which will set back hard-won global health gains,” Wheeler said.

Until this policy is rescinded, Human Rights Watch recommends that the State Department, USAID, and other US agencies that provide global health funding:

  • Conduct a comprehensive, transparent, annual review of the policy to assess impact, including potential increases in injuries and deaths from unsafe abortions;
  • Disseminate clear and detailed information about the policy and compliance requirements in an accessible way to organizations, including sub-recipients and others with no direct contact with grant administrators;
  • Strengthen sexual and reproductive health programs, including for post-abortion care services and for safe abortion care in the case of incest, rape and to save a woman’s life; and
  • Use the secretary’s power to grant case-by-case exemptions to mitigate the policy’s harm.
Posted: January 1, 1970, 12:00 am

Summary

Historically, when children with atypical sex characteristics were born in the United States, 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 these people—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, 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—internal sex organs, genitalia, or gonads that do not match typical definitions of male and female. This medical paradigm remains the status quo nearly everywhere in the world today.

Defaulting to surgery resulted in stigmatization, confusion, and fear. In some cases, doctors advised parents to conceal the diagnosis and treatment from the child, instilling feelings of shame in parents and children both. And as a result, many in an entire generation of intersex people did not learn about their conditions until they saw their medical files as adults—sometimes as late as in their 50s.

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 changed 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. During this evolution in care, cosmetic surgeries on intersex children’s genitals have become highly controversial within the medical community. However, while the establishment of “DSD teams” has been perhaps the most significant evolution in care and has changed practices considerably, it has not addressed the fundamental human rights issues at stake.

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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 with broad disagreements among practitioners that implicate the human rights of their intersex patients. While there are certain surgical interventions on intersex children that are undisputedly medically necessary, such as the creation of a urinary opening where one does not exist, some surgeons in the US continue to perform medically unnecessary “normalizing” surgeries on children, often before they are one year of age. These operations include clitoral reduction surgeries—procedures that reduce the size of the clitoris for cosmetic reasons. Such surgery carries the risk of chronic pain, nerve damage, and scarring. Other operations include gonadectomies, or the removal of gonads, which result in the child being sterile and forced onto lifelong hormone replacement therapy.

Healthcare providers are an important source of information and comfort amidst confusion. “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.”

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.” 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?”

In July 2017, three former US surgeons-general, including one who was a pediatric endocrinologist, 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.

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. Even after two decades of controversy and debate, there remains no research showing that early, medically unnecessary surgery is helpful to the intersex child. Nonetheless, to date, none of the clinics we surveyed have firmly instituted a moratorium on such operations. The evidence is overwhelming that these procedures carry risk of catastrophic harm. And while increasing numbers of doctors believe it is wrong to conduct these procedures, recent data demonstrate that many clinics continue to do so. Alice Dreger, a bioethicist who has written two books on intersex issues and served on a National Institutes of Health multi-site research project before resigning in protest in 2015, wrote of her two decades of engagement on the intersex surgery controversy: “While many clinicians have privately shared my outrage about these activities, in public, the great majority have remained essentially silent.”

International human rights bodies have recognized the practice as implicating and potentially violating a range of fundamental rights, including the rights to health, autonomy, integrity, and freedom from torture. At present, many of the doctors who advise or conduct surgeries on intersex infants and young children cite a lack of data on the outcomes for children who do not undergo surgery. “We just don’t know the consequences of not doing it,” a gynecologist told Human Rights Watch regarding medically unnecessary surgery. Others continue to call for data collection regarding the impact of the intact intersex body on families and society—as if intersex people are a threat to the social order. For example, a 2015 article co-authored by 30 DSD healthcare providers reflecting on genital surgeries published in the Journal of Pediatric Urology 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….

Human Rights Watch and interACT believe 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.

Doctors have said they are seeking guidance on the issue so that they can avoid repeating the mistakes of the past. For example, in 2017, Dr. Ilene Wong, a urologist in Pennsylvania, acknowledged the harm in which she took part when she conducted surgery on an intersex child without her consent. She wrote: “Eight years ago, I did irrevocable damage to the first intersex person I ever met.” She said:

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.

Others have offered similar testimony. Dr. Deanna Adkins, the Director of the Duke University Center for Child and Adolescent Gender Care, made an expert declaration to oppose North Carolina’s 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 argued:

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.

An endocrinologist on a DSD team told Human Rights Watch: “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.” A DSD specialist Human Rights Watch interviewed argued that “there's probably rare if any situations where surgery is absolutely necessary.” She said doctors needed “clear guidelines, clear practice standards”—what she called “general principles of care and make it very clear that the emerging data is in favor of not intervening.”

Such guidelines have begun to emerge. In 2016, the American Medical Association Board of Trustees issued 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.” The board recommended adoption of a resolution that, “except when life-threatening circumstances require emergency intervention, [doctors should] defer medical or surgical intervention until the child is able to participate in decision making.”

Accordingly, Human Rights Watch and interACT are urging the AMA, the American Academy of Pediatrics, and other medical bodies, in line with the oath to “Do No Harm,” to support 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

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, we have referred to them using 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.

This report draws heavily on and includes excerpts from the July 25, 2017 report by interACT and Human Rights Watch titled “I Want to Be Like Nature Made Me”: Medically Unnecessary Surgeries on Intersex Children in the US. Whereas that previous report examined the experiences of intersex adults, parents of children with intersex traits, and medical practitioners who work on intersex cases, this report focuses largely on the role of medical practitioners and changing medical views of intersex issues. In preparing the current report, we interviewed additional medical practitioners and consulted additional secondary sources, such as recently-published peer-reviewed medical journal articles, relevant to the medical paradigms under consideration.

A Human Rights Watch researcher and a research consultant who is a practicing physician in California conducted the interviews cited in this report. In all, we conducted in-depth interviews with 30 intersex adults, 2 intersex children, 17 parents of intersex children, 21 and healthcare practitioners, including gynecologists, endocrinologists, urologists, psychologists, and other mental health providers who work with intersex people.

In the course of this research, 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 Appendices 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. We received several written responses declining to be interviewed. 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. All interviewees are represented only by pseudonyms; in the cases of healthcare providers, they are represented only by their specialty. Neither the names of doctors nor their institutions are mentioned anywhere in the report.

Background

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 undertaken. 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 that implicate the human rights of their intersex patients. While there are certain surgical interventions on intersex children that are undisputedly medically necessary, such as operations to repair bladder exstrophy, some surgeons in the US continue to perform medically unnecessary, cosmetic surgeries on children, often before they are one year of age.

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.”[1]  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.”[2]

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.”[3]

Doctors and researchers in recent years have increasingly spoken out against medically unnecessary non-consensual surgeries on intersex children. For example, 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.”[4] 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.[5] 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.”[6]

Going further back, 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.”[7] 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.[8]

In 2015, bioethicists and patient advocates affiliated with the Differences of Sex Development-Translational Research Network (DSD-TRN)—a multi-site NIH-funded university research initiative—resigned, citing frustration with the ongoing use of medically unnecessary surgeries on intersex children, use of genital photography of children in research, and, as one medical ethicist put it in her resignation: “Being asked to be a sort of absolving priest of the medical establishment in intersex care.”[9]

The ethicist who wrote that, Alice Dreger, has highlighted that throughout her decades of work and two academic books[10] on intersex issues, “While many clinicians have privately shared my outrage about these activities, in public, the great majority have remained essentially silent.”[11]

This report attempts to shed light on the private analysis doctors undertake by drawing on anonymized Human Rights Watch interviews with 21 practitioners in 2016 and 2017. Many described increasing discomfort among healthcare providers with the current haphazard and insufficient standards of care for intersex youth, and a desire for clear, centralized guidelines. As demonstrated in the timeline below, medical associations have been gradually adjusting their understanding of the controversy around medically unnecessary surgeries to reflect how their members see it—a set of issues that, while contentious is in clear need of centralized guidance to protect patients from harm.

As Dr. Katie Dalke, a psychiatrist who is also an intersex woman, wrote in a 2017 op-ed:

More than to do no harm, we want to do something good. We dedicate ourselves to helping our patients confront and conquer the unthinkable: sickness, pain, and death.

But as an intersex person, I know that “correcting” and concealing intersex bodies causes harm. If our community, including our caregivers and medical-care providers, are to develop standards of care that do good, they must respect bodily diversity. Doctors need to stop trying to avoid harm by trying to fix or hide our bodies and pain.

I know it’s existentially jarring to accept that physicians can be a cause of suffering. Like my peers, when I am on the receiving end of a patient’s anger, I turn to colleagues for support and scour databases to learn what I can do differently. Like my peers, knowing that a patient felt I didn’t do what was best for them lingers in my mind every time I see someone who reminds me of where I went wrong. And like my peers, my helplessness and guilt can make me want to blame or avoid my patient.

And yet, progress cannot occur without validating the anger that patients feel as a direct consequence of their treatment. Some physicians struggle to understand this, insisting that they did what they were taught was right, dismissing intersex people’s pain as non-representative, and telling us we need to not be “angry activists.”

Dr. Dalke urged her fellow healthcare providers to engage with the intersex community, not dismiss their anger:

By listening to and legitimizing the anger and hurt of intersex people, physicians can help us heal. This is absolutely critical to create affirming, supportive, and transparent treatment models. Ending medically unnecessary non-consensual surgeries is the first step—a necessary change to build trust. Then we can all begin to build a model of care focused on healing.[12]

The Evolution of Medical Understandings and Protocol

1996: The American Academy of Pediatrics (AAP) 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.”[13]

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.”[14] 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.[15]

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.[16]

2000: The AAP 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…”[17] 

2004: The National Institute of Diabetes & Digestive & Kidney Diseases states: “[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.”[18]

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.[19]

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.[20]

2010: The AAP publishes a position statement opposing all forms of female genital cutting, with no explicit exception for girls with intersex traits.[21]

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.”[22]

2011: The World Professional Association for Transgender Health (WPATH) releases revised Standards of Care that include 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.[23]

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.”[24]

2013: The AAP 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.[25]

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.”[26]

2014: The provisional section on Lesbian, Gay, Bisexual, and Transgender Health and Wellness of the AAP 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).”[27]

2015: Patient advocates and bioethicists publicly resign from the DSD-TRN, 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.”[28]

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.[29]

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.”[30]

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.[31]

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.”[32]

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.”[33]

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.”[34]

Anxieties About Social Outcomes Drive Surgery

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 United States—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—clitoral surgery was reported 70 times. Many hospitals do not participate in these databases.[35]

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 conducted a literature review of genital surgeries performed on intersex children between 2005 and 2012; the average age was 11.2 months.[36] 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.[37] 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.[38]

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 toward 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.

Many providers interviewed for this report 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.”[39]

Medically unnecessary surgeries persist. For example, in our July 2017 report, we documented a case in which parents were urged to elect surgery on their 11-month-old child in 2010 before they had even received the child’s DSD diagnosis. We also interviewed families who faced intense pressure from doctors to elect medically unnecessary surgeries at major DSD “centers of excellence” in the past three years.

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.[40] As documented in our July 2017 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 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 attraction— because it’s not OK in their community.”[41] 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.” [42]

A urologist who works with a DSD team told Human Rights Watch that 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.[43] As we found previously some parents who found their way to peer support groups found their fears greatly relieved when they talked to more experienced parents, and learned useful strategies for dealing with the situations they dreaded.[44]

An endocrinologist on a 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.[45] 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. As 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.”

A urologist Human Rights Watch interviewed explained that societal expectations were driving the perceived need for clitoral reduction surgeries:

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 of body and not get any grief…[46]

Another doctor on a DSD team said: “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.”[47] Another doctor explained that she understood the persistence of medically unnecessary surgeries in the field as one of inertia and resistance to change: “If this is your career as this is part of your professional identity, if this is a specialty you've become known for, it is very hard to back away from it,” she said. “I think that there are going to be a few doctors…who really built a career on providing normalizing surgeries. It's going to be very hard to back away and say, ‘yeah there's maybe another way maybe a better way to care and support these families.’”[48]

A dearth 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 (or refuse) 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.”[49]

Doctors, in their clinical conversations with parents, are in a good position to correct these assumptions and put social hypotheticals into better perspective. “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 told Human Rights Watch. “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.”[50] He explained:

The solution to [intersex children] fitting in or not fitting in is not solved by compelling them to do something that is the scientifically wrong thing. An example would be the approach to left-handedness. There was an era not very long ago, similar timeframe, frankly, 50 years ago, where being left-handed was considered not fitting in, whether it be for penmanship or for use of various devices or for athletics and therefore, in order to have your child fit in, your child needed to be right-handed. We went to some great lengths to make that happen. If you ask now, go back to the medical establishment, the medical establishment's role there would be to say, ‘No. Being left-handed is a biological phenomenon. You can't change that. You're going to do more harm forcing people to change. Rather, on the fitting in question, society has to change so that left-handed people are also accepted.’

According to this doctor, “It's the role of the medical establishment to talk about the science and how we understand the biology actually to be.” He said:

When we're talking about intersex individuals, if we're going to be scientists, it does not make sense for us to suggest that there ought to be procedures in order to fix children to make them fit in, surgical procedures that are going to have negative consequences downstream.[51]

Providers Increasingly Hesitant to Recommend Surgery

Some doctors have come out publicly to discuss their involvement in and discomfort with the default-to-surgery paradigm.

For example, Dr. Ilene Wong, a urologist in Pennsylvania, wrote in a 2017 op-ed:

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. 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.[52]

Like Dr. Wong, many providers who care for intersex children have become increasingly uncomfortable with the current paradigm. Despite the lack of clear, centralized standards of care for intersex patients, many providers express an increased sense of caution when it comes to recommending medically unnecessary surgeries for children. However, that hesitation has not resulted in comprehensive practice reform. Some doctors continue to recommend and conduct surgeries that are medically unnecessary, high-risk, and without proven benefits.

Doctors Human Rights Watch interviewed at two DSD clinics said that part of their informed consent process with parents of intersex infants who were considering medically unnecessary surgeries was to tell them that United Nations experts and other human rights bodies consider the operations a form of torture. However, doctors at both clinics confirmed that that information did not prevent all parents from opting into the procedures.

Individual providers also explained the increased caution with which they and their colleagues approach medically unnecessary surgeries. For example, a urologist told Human Rights Watch, “I think we're being very cautious about anything that removes tissue.” She said her clinic sets a strict six-month minimum age for medically unnecessary surgeries, which they communicate to parents 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.”[53] However, this urologist clarified that this has not resulted in a complete end to cosmetic operations on children over six months old: “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.” [54]

An endocrinologist on a DSD team 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.”[55]

A urologist Human Rights Watch interviewed explained that he sees the emerging skepticism regarding early medically unnecessary surgeries on intersex children as a result of the risks involved. Calling genital surgery “an emotionally charged issue,” he 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.[56]

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.”[57]

A psychologist on a DSD team 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.”[58]

A mental health provider on another DSD team said she observes similar patterns—and surgeries continue. 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.[59]

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.’”[60] A urologist Human Rights Watch interviewed offered an example of a case in which he convinced parents to decline genital surgery. The patient was an 8-year-old with CAH whose genitals were, the doctor said, “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. [61]

Some providers Human Rights Watch interviewed explained how they invested time in debunking myths that parents believed. For example, a mental health practitioner on a DSD team 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.[62] Indeed this is a commonly cited fear[63]—though not necessarily one based in reality.[64]

A urologist on a 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.”[65] Another urologist echoed this sentiment, saying: “There's no such thing as a value-free consultation.”[66]

Other providers expressed their conflicted feelings about the default-to-surgery paradigm by exploring hypotheticals were there to be a ban on medically unnecessary operations. For example, an endocrinologist with decades of experience treating intersex children explained:

I can't think of a case right now where [doing medically unnecessary surgery] 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.[67]

Others explored the roots of the paradigm—insofar as it relies on stereotypes about what a “typical” male or female body should look like and how it should function during heterosexual intercourse. For example, a gynecologist who treats intersex children 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.[68]

Parents Anxious About Being Misled

I think more and more families are concerned about surgery on their kids. I think that the current FDA statement regarding prolonged anesthetic in children…. Once that gets out there more I suspect that will also influence families.

     —Pediatric surgeon[69]

Several of the parents Human Rights Watch interviewed—including parents who had elected medically unnecessary surgeries for their intersex children and those who had not—described the anxiety they felt when communicating with doctors about their child’s intersex condition. Some felt outright bullied, intimidated, and lied to. Others said their experience left them feeling like the providers charged with advising them on their child’s healthcare were judging them based on arbitrary values, and not medical evidence.

Thomas, the father of a two-year-old with Congenital Adrenal Hyperplasia (CAH)—one of the most common conditions that can cause intersex traits—told Human Rights Watch he and his wife met with multiple specialist teams within a year of their daughter being born in 2015, and received advice based not on data but on doctors’ personal opinions of atypical genitalia. For example, one urologist told him that leaving his daughter’s genitals intact would put her at 75 percent risk for a UTI. Thomas told Human Rights Watch: “Doctors provided us with [information] that's not backed up in the literature. It's stuff that has just always been done in medicine.” 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.

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:

[The doctor] 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. As a clinician, he had access to medical databases, so he researched the topic. “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.” There is no reliable evidence that genital surgery will reduce rates of UTIs in children with intersex traits— in fact, surgery may increase UTI risk.[70]

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.”[71] 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.”

Thomas and Tracey—like other parents of children with intersex traits—were left feeling isolated, but determined to make the best decision for their child’s health and future. Thomas 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.[72]

A mother of two children with intersex traits explained what she saw as the core struggle parents often face:

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. 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.[73]

Lack of Informed Consent

Both international human rights and US medical standards uphold informed consent as a pillar of medical ethics. Providers are required to give sufficient and accurate information needed for patients to provide informed consent, especially when the consequences of surgery on a child’s genitals or internal reproductive organs can include scarring, incontinence, loss of sexual sensation and function, psychological trauma, risk of anesthetic neurotoxicity, sterilization, the need for lifelong hormonal therapy, and irreversible surgical imposition of a sex assignment.

In some cases Human Rights Watch documented, the presentation of information as well as the content of information provided by doctors didn’t give parents of intersex children a chance to provide informed consent in a meaningful way.

Providers Human Rights Watch interviewed maintained that they provide all options and share relevant scientific information with patients and their families. However, the parents of intersex patients Human Rights Watch interviewed had different experiences with medical practitioners, ranging from having doctors who were kind and supportive at first but turned dismissive when parents questioned their surgery recommendation, to doctors who provided them with incomplete or misleading information.

Judy and Carl, parents of a child with an intersex condition, said they experienced intense confusion when their child was born with atypical genitals in 2009, and doctors first assigned the child female—then four days later, male. They took their healthy baby home without a DSD diagnosis, and with a lot of lingering questions.

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 [Androgen Insensitivity Syndrome]. 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 April 2010. The procedure required a follow-up surgery eleven months later that resulted in two post-operative infections. Two days after the family was released from post-operative infection care, a letter arrived in the mail telling them their son, Jack, had tested positive for Partial Androgen Insensitivity Syndrome (PAIS). This meant that, according to medical data, his future gender identity was uncertain and his body would not respond like most boys to testosterone as he grew up. 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 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.

 “We are smart enough to rationalize things and think through the outcomes,” said Judy, wishing that they had had better information and support during the decision-making process. “It’s frustrating, we’re angry,” said Carl. “We beat ourselves up about this” 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 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?[74]

A pediatric surgeon Human Rights Watch interviewed expressed similar views about differences in children. She said she tries to explain to parents that “many children have differences,” explaining that:

We deal with kids with all kinds of vascular anomalies and port wine stains. And we encourage those children to be out there, we encourage those children to be in school—and they are and they do great. We've got kids with Ellis Von Creveld[75] and Treacher Collins[76] who are totally well integrated into the school and they have significant facial anomalies. And I think that it speaks to the strength of the family and the strength of the child and the support of the care team that you can have a difference and you can go out there and we don't need to necessarily create normalization to make you safe and well adjusted. [77]

Intersex Children Can Thrive Without Surgery

In July 2017, the AIS-DSD Support group—the largest intersex adult, children, and family support group in the US—joined Human Rights Watch in writing to the AMA to share our report on intersex issues. In the letter, supporting a proposed AMA resolution on optimal management of DSD through individualized, multidisciplinary care, AIS-DSD explained:

If the AMA adopts the proposed [Board of Trustees] resolution, we hope that the AIS-DSD Support Group will be able to shift the focus of our support efforts over time away from helping adults, youth and their families recover from medically-induced traumas, and toward support of the physical and psychological health of our members, from birth to old age.[78]

Over time, support groups have been able to help parents resist pressures to elect high-risk and medically unnecessary irreversible procedures on their children. While much of the narrative of the intersex human rights movement has focused on the stories of intersex people who underwent non-consensual surgeries and suffered physical and psychological fall-out from the procedures, some intersex youth who did not undergo surgery have begun speaking out as well. Recent video segments produced by Teen Vogue[79] and Buzzfeed[80] showcase intersex youth who have not undergone surgeries, despite pressure from doctors to do so.

A 2017 Harper’s investigative report from the Dominican Republic, where most intersex children are left intact, showed that social awareness, and parent and teacher response help mitigate bullying—as with any other kid.[81] Intersex activist Hida Viloria, who did not have surgery, told Rolling Stone in 2017 about her decades of telling her story publicly:

My goal was that a parent who might have recently had an intersex child or have one in the future would see my interview and think, ‘Oh, being intersex is fine and this person has been able to grow up happy and successful and feel good about themselves. There's no reason I have to cut up my child's body in this non-consensual, irreversible way. I'll just let them grow up and decide later on if they want to change anything about their body, the way most people get to decide.’[82]

Emerging data, while limited, support these observations. 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.”[83]

The Positive Role of Peer Support Groups

International DSD consensus statements and the World Health Organization have emphasized the positive role and importance of support groups. Many providers Human Rights Watch interviewed cited various ways they referred patients to support groups including directing them to websites of established groups such as CARES Foundation, AIS-DSD Support Group, or the Accord Alliance, or putting parents in touch with other parents within the hospital clinic’s network. 

However, many parents of intersex children reported a range of encounters with providers in regard to support groups. Some parents said that doctors provided information about such groups as a part of the regular care of their child, others said that doctors did not proactively offer information, and still others reported that they were told no such resources existed.

Regardless of how parents found support groups, across the board they expressed that the groups were life-affirming and helpful for the entire family. These groups not only helped intersex children and their parents feel like they were not alone, but they were a source of practical support, providing tools on how parents can best advocate for their children. 

For intersex adults, too, accessing support groups was invaluable in gaining confidence, combatting shame and stigma, and accessing information.

Another study, published by doctors at Seattle Children’s Hospital in 2017, showed that even in a case where parental discomfort with bodily difference was motivating them to elect a medically unnecessary gonadectomy on their child, and doctors wanted to carry out the parents’ wishes, hospital and state ethics and sterilization policies required that the procedure be deemed medically necessary, or else let the child decide later. The paper explained:

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.[84]

What is more, doctors who work with intersex patients are increasingly understanding the advice they give parents in the context of physicians’ role in caring for children with a range of differences. A pediatric surgeon told Human Rights Watch:

I live in a community where I know we have two Treacher Collin's kids in our high school. And they are well integrated and I see them in the school I see them out in the streets of our village with friends. And if those kids can do that with their facial anomalies and their surgeries and their reconstructions so that they can safely breathe, they can eat, they can swallow, I am sure that with the appropriate support and the appropriate attitude we can keep our DSD kids safe and well-integrated and well-adjusted in their school and their growing up environments without cosmetically oriented surgeries.[85]

Recommendations

In our July 25, 2017 report, Human Rights Watch and interACT made recommendations to a range of government, law enforcement, and medical bodies. The recommendations below are a selection of those specifically targeted at medical bodies:

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 the adult he or she will become; (2) respects the rights of the patient to participate in decisions and, except when life-threatening circumstances require emergency intervention, defers medical or surgical intervention until the child is able to participate in decision making; and (3) provides psychosocial support to promote patient and family well-being.”[86]

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 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.[87]

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 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

Kyle Knight, a Human Rights Watch researcher, wrote this report based on research he and Suegee Tamar-Mattis, an intersex person and family physician in California conducted in 2016 and 2017. MJ Movahedi, LGBT rights program associate, drafted some sections of the report.

The report was reviewed by Kimberly Zieselman, executive director of interACT, Sylvan Fraser, staff attorney at interACT, and Alesdair Ittelson, legal and policy director at interACT.

Graeme Reid, director of the lesbian, gay, bisexual, and transgender rights program at Human Rights Watch edited the report. Grace Meng, deputy US program director, Megan McLemore, senior health and human rights researcher, and Michael Garcia Bochenek, senior children’s rights counsel reviewed the report. Chris Albin-Lackey, senior legal adviser, and Joseph Saunders, deputy program director reviewed the report. Production assistance was provided by MJ Movahedi, LGBT rights program associate; Madeline Cottingham, photo and publications coordinator; Fitzroy Hepkins, administrative manager; and Jose Martinez, senior coordinator.

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

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

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

[4] 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.

[5] 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.

[6] 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.

[7] Joel Frader et. al., “Health Care Professionals and Intersex Conditions,” The Hastings Institute, http://www.isna.org/pdf /Frader2004.pdf

[8] 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

[9] Alice Dreger, “Rejecting the Tranquilizing Drug of Gradualism in Intersex Care.” Alicedreger.com, November 21, 2015, http://alicedreger.com/DSD_human_rights.

[10] Alice Domurat Dreger. Hermaphrodites and the Medical Invention of Sex. (United States of America: Harvard University Press, 1998); Alice Domurat Dreger. Intersex in the Age of Ethics. (Frederick Maryland: University Publishing Group, 1999).

[11] Ibid. 

[12] Katie B. Dalke, “Why Intersex Patients Need the Truth and Doctors Need to Listen,” The Nation, September 12, 2017, https://www.thenation.com/article/why-intersex-patients-need-the-truth-and-doctors-need-to-listen/

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

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

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

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

[17] 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.

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

[19] 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/

[20] 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

[21] “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.  

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

[23] 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

[24] 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

[25] 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

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

[27] “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

[28] See Appendix III 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.

[29] 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

[30] [30] 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

[31] GLMA, “Medical and Surgical Intervention of Patients with Differences in Sex Development,” October 3, 2016, http://glma.org/index.cfm?fuseaction=document.viewdocument&ID=CEB9FEE4B8DD8B7F4F7575376BD476C3A433379DD853BEA17913AFCCB8270299C0731320B03D2F5E1022F1C15602FBEA

[32] 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

[33] 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.  

[34] 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

[35] 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).

[36] 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.”

[37] 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.

[38] 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.

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

[40] 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.

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

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

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

[44] Human Rights Watch, “I Want to Be Like Nature Made Me”: Medically Unnecessary Surgeries on Intersex Children in the US, July 25, 2017, https://www.hrw.org/report/2017/07/25/i-want-be-nature-made-me/medically-unnecessary-surgeries-intersex-children-us

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

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

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

[48] Human Rights Watch interview with a pediatric surgeon, April 28, 2017.

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

[50] Human Rights Watch interview with an endocrinologist, June 1, 2017.

[51] Human Rights Watch interview with an endocrinologist, June 1, 2017.

[52] 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.

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

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

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

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

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

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

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

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

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

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

[63] 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

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

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

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

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

[69] Human Rights Watch interview with a pediatric surgeon, April 28, 2017.

[70] 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).

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

[72] Human Rights Watch interview with Thomas A., location withheld, December 6, 2017.

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

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

[75] Ellis van Creveld (EvC) syndrome, also known as chondroectodermal dysplasia, is characterized by abnormalities in the skeleton. These abnormalities include short arms and legs, extra fingers and/or toes, and a narrow chest.

[76] Treacher Collins syndrome is a genetic, craniofacial condition that is characterized by a range of distinctive facial anomalies.

[77] Human Rights Watch interview with a pediatric surgeon, April 28, 2017.

[78] See appendix IV

[79] Teen Vogue, “What Was Done to These Intersex People Was Not Okay,” June 18, 2017, https://www.youtube.com/watch?v=mT4dDO-ZwcQ

[80] Buzzfeed, “What It’s Like to Be Intersex,” March 28, 2015, https://www.youtube.com/watch?v=cAUDKEI4QKI

[81] Sarah Topol, “Sons and Daughters—The village where girls turn into boys,” Harper’s, August 2017, https://harpers.org /archive/2017/08/sons-and-daughters/

[82] Rolling Stone, “Intersex Activist and Writer Hida Viloria on Being 'Born Both',” March 20, 2017, http://www.rollingstone.com/culture/intersex-activist-hida-viloria-on-being-born-both-w472894

[83] 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.

[84] 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).

[85] Human Rights Watch interview with a pediatric surgeon, April 28, 2017.

[86] 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.

[87] 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

Medical professional associations should enact standards of care for intersex children that rule out medically unnecessary surgery before patients are old enough to consent.

(New York) – Medical professional associations should enact standards of care for intersex children that rule out medically unnecessary surgery before patients are old enough to consent, Human Rights Watch and interACT said in a report released today. After decades of controversy in the medical community over the procedures, the lack of centralized care standards allows doctors to continue operating on children’s gonads, internal sex organs, and genitals when they are too young to participate in the decision, even though such surgery is dangerous and could be safely deferred.

The 41-page report, “A Changing Paradigm: US Medical Provider Discomfort with Intersex Care Practices,” examines the controversy over the operations inside the medical community and the pressure on parents to opt for surgery.

"Justice for Intersex Kids" - interACT

© 2017 interACT

Once called “hermaphrodites” – a term now considered pejorative and outdated, intersex people are not rare, but their needs 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 intersex community today is saying the same thing we were saying two decades ago – we want doctors to care for us, not try to ‘fix’ us,” said Kimberly Zieselman, an intersex woman and the executive director of interACT Advocates for Intersex Youth. “We’re not anti-doctor or anti-surgery, we’re just pro-consent and pro-honesty, especially for children who are too young to speak or to comprehend what’s going on around them."

Human Rights Watch and interACT released the report on the 21st Intersex Awareness Day, which commemorates the first public protest against medically unnecessary surgery, at the 1996 American Academy of Pediatrics conference in Boston.

As many as 1.7 percent of babies are different from what is typically called a boy or a girl. The chromosomes, gonads, or 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. Any of these children 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 result in sterilization, 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. While certain surgical interventions on intersex children are undisputedly medically necessary, some surgeons in the US perform risky and medically unnecessary cosmetic surgery on intersex children, often before they are even able to talk.

Medical protocols have evolved. It is increasingly common for multi-disciplinary teams to treat intersex patients, often called cases of “Differences of Sex Development” (DSD.) This is a marked improvement over families meeting solely with a surgeon. Most medical practitioners now acknowledge that parents may prefer to leave their child’s body intact. And while there are no centralized standards of care for intersex children, expert practitioners Human Rights Watch interviewed highlighted the need for change.

“Many children have differences,” one pediatric surgeon told Human Rights Watch. “We deal with kids with all kinds of vascular anomalies and port wine stains, and we encourage those children to be out there, we encourage those children to be in school – and they are, and they do great…you can have a difference. We don't need to necessarily create normalization to make you safe and well-adjusted.”

Guidelines have begun to emerge. In 2016, the American Medical Association (AMA) Board of Trustees issued 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.” The board recommended adoption of a resolution that, “except when life-threatening circumstances require emergency intervention, [doctors should] defer medical or surgical intervention until the child is able to participate in decision making.”

In a 2017 letter to the AMA, the largest US support group for intersex people and parents of intersex children, called the AIS-DSD group, wrote: “We hope that the AIS-DSD Support Group will be able to shift the focus of our support efforts over time away from helping adults, youth and their families recover from medically-induced traumas, and toward support of the physical and psychological health of our members, from birth to old age.”

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.”

In a statement marking 2017 Intersex Awareness Day, Physicians for Human Rights said: “Carrying out an irreversible and medically unnecessary surgery before a child is old enough to meaningfully consent violates informed consent requirements, and violates the obligation to do no harm,” and called for an end to medically unnecessary surgery until a child is old enough to participate meaningfully in such decisions.

“Medical professional bodies should demonstrate the leadership doctors look to them for,” said Kyle Knight, Human Rights Watch researcher and author of the report. “The American Medical Association, the American Academy of Pediatrics, and other specialist bodies should draw a hard line and say that except in cases of medical necessity, surgery on intersex children should be delayed until they can participate in the decision themselves.”

Posted: January 1, 1970, 12:00 am

Medical professional associations should enact standards of care for intersex children that rule out medically unnecessary surgery before patients are old enough to consent, Human Rights Watch and interACT said in a report released today.

After decades of controversy in the medical community over the procedures, the lack of centralized care standards allows doctors to continue operating on children’s gonads, internal sex organs, and genitals when they are too young to participate in the decision, even though such surgery is dangerous and could be safely deferred.

Posted: January 1, 1970, 12:00 am

Protesters gather in front of the Parliament building during a protest in Warsaw, Poland, July 16, 2017.

© 2017 Reuters

Over the past two years, Poland’s government has tightened its control over the courts, the media, and domestic rights groups. Thousands of outraged citizens have staged protests nationwide against these moves, even successfully pressuring the government to withdraw some laws that would have further restricted rights. Philippa Stewart speaks to Europe researcher Lydia Gall about what is happening in the country, and what needs to be done.

What is happening in Poland right now?

We have a situation where the government has essentially engaged in a power grab. It is seeking to put everything that might be a threat to its power under its control.

That includes the courts, ombudsmen, even the people out demonstrating or the media reporting on all this – indeed, any institution or entity that seeks to be critical. The shape or form the criticism takes doesn’t matter, the government is seeking ways to stop or limit it. Ultimately, they are trying to restrict the flow of critical opinions or information by locking down the very institutions democratic countries put in place to act as checks and balances on the government and to protect the people.

If it keeps going this way, we could have a situation where the government is in full control, where no critical voices would be allowed. That is the worst-case scenario for Poland’s future.

Why is that?

There are several institutions, such as the courts and media, whose role is not to serve the government of the day, but to act independently so they can protect people from government overreach or abuse. But when their independence is completely undermined by government policies, who’s left to protect you?

This government has taken their democratic mandate and misused it to stifle democratic voices.

Why should this matter to normal people in Poland?

When the going is good the whole concept of “rule of law” and “checks and balances” is not something that people walk around thinking about every day. It’s when the going gets tough that that people suddenly wake up and ask questions. The Polish people have been doing this, but it’s more important than ever now.

If you have an abusive boss or you’re the victim of a crime and you want to go to the authorities for help or protection, you want to be able to trust those authorities to treat your problem fairly. You can’t count on the courts’ objectivity and independence if they are controlled by the government, you can’t really trust the media if the messages are being controlled by the government, and you can’t trust other institutions to work to protect your rights as a resident of that country.

Losing the guarantee of a fair hearing because the courts are being controlled politically could affect you on a lot of different levels, such as if you are accused of a crime, or if your home is subject of compulsory purchase by the state. If it’s up to the good will of individual judges whether or not you get a fair hearing then that’s a problem. A fair hearing isn’t something that should be left to chance.

A new law allows common court judges to be dismissed without any reason, not by their peers but by the president and so you have these arrangements that are problematic, that you might not feel personally as a citizen of Poland right at this moment but that may have some very serious implications for you if you ever need the justice system to protect your rights.

Other than the courts, what is being restricted in Poland?

The media are also being intimidated through various legislative measures to make it easier to punish those who may write or report critically on the government. That affects the public as well. Now, information might be compromised or censored.

As a journalist, you might be inclined to write what the government wants just to put food on the table for your family. It has quite severe implications for the information flow when critical voices are losing their jobs.

People wave at a European Union flag during an EU parade, in Warsaw May 15, 2005.

© REUTERS

There’s also a clampdown on civil society – groups working on issues like women’s rights, or asylum. The government just adopted a law that basically centralizes all public funding – money these groups depend on – in an effort to obstruct and restrict the work they are doing. 

That is a sweeping range of issues.

Yes, and there are also specific communities whose rights are being compromised. For example, women’s and girls’ reproductive rights are threatened with further restrictions in a country that already has some of the most restrictive abortion rules in Europe.

Then you also have an issue with how the government is treating asylum seekers. Asylum seekers are summarily returned from the Polish border to Belarus, a country where they are not safe, and a country where they might risk being returned to their countries of origin, where they are certainly not safe.

Third, the new counterterrorism legislation has a very broad and vague definition of terrorist crimes and allows for arbitrary surveillance on very vague grounds, and lengthy pretrial detention before formally charging suspects. It also allows authorities to shut down websites on arbitrary grounds.

It might seem quite abstract to people on the street, but the Constitutional Tribunal – basically the highest court in the country, which monitors whether the laws passed by the government are in line with the constitution – has basically been paralyzed for the past two years. This means that laws being adopted that violate constitutional principles can’t be struck down because the government is refusing to accept the rulings from the Tribunal.

What can people in Poland do?

People have taken to the streets and they do protest these measures, which is good. It has, on occasion, made the government budge on issues. Mass protests helped stop the government from further restricting Poland’s abortion law, and nationwide protests pressured Poland’s president to veto controversial laws undermining the independence to the judiciary.

People wave EU and Polish flags as they march during anti-government demonstration organized by main opposition parties in Warsaw, Poland May 7, 2016.

© 2016 Reuters

It is more important than ever now for people to speak out because the very right to take to the streets is under threat and has been restricted by the government. Clearly there is a reason why the government is doing it, they are not keen on thousands of people taking to the streets. Protest is working so they have introduced laws that make it more difficult to protest.

How has the situation been allowed to reach this stage?

That this is going on in an EU member state may be troubling, but sadly not surprising. We have a similar situation in Hungary that started seven years ago. The EU’s failure to impose any consequences on Hungary for rolling back rights sent a message to Poland that if Hungary got away with it, they can – get away with it too – and they are.

What can be done?

The European Commission can take action against a member state in which there is a systemic threat to the rule of law. It is doing finally taking action – for the first time – against Poland. The first step was creating a “dialogue,” which has been under way for almost two years. In short, the commission is saying, “These are the things the Polish government needs to do,” but the Polish government has basically ignored all recommendations. The next stage is to trigger proceedings that can ultimately lead to the member state being deprived of its voting rights at the council level.

Poland also receives more EU funding per capita than most other EU countries. These funds should only be given to Poland if its government meets certain conditions. If the European Commission doesn’t get serious about holding the Polish government to account for backtracking on rights, the risk is that other EU member states will be tempted to follow a similar path. That would put the credibility of the EU as a whole into question. 

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am

U.S. Senator Rand Paul (R-KY) applauds as U.S. President Donald Trump signs an executive order to make it easier for Americans to buy bare-bones health insurance plans and circumvent Obamacare rules at the White House in Washington, U.S., October 12, 2017.

© 2017 Reuters

Having failed – again – to gain congressional support for repealing the Affordable Care Act (ACA), US President Donald Trump last week took two actions that will undermine some of its core principles.

The President’s executive order allows for new, unregulated insurance packages – touted as expanding insurance options by the administration. However, many experts believe these changes will pull younger, healthier people out of the current insurance exchanges, where people can buy insurance compliant with the ACA, to buy so-called junk insurance. This would undermine the viability of the exchanges and leave those with greater healthcare needs – older people, those with low incomes, and people with pre-existing conditions – with too-high premiums, pricing them out of affordable health care.

The order makes it easier for small businesses and groups to work together and buy “association health plans” and short-term insurance coverage. These plans typically offer cheaper premiums, but include fewer benefits. Despite a problematic history of bankruptcies and failure to pay people’s medical bills, association health plans, like short-term insurance plans, are often attractive to younger, healthier consumers.

The ACA limited both options in order to spread the risk for insurers by including both healthy and sick people. After all, a person’s age or health history should not affect their ability to obtain coverage. Indeed, this is fundamental to Obamacare, which has promoted the right to health by making affordable insurance coverage available to millions of Americans. According to the Kaiser Family Foundation, a nonprofit group, these alternative health plans create a “parallel” insurance market not covered by ACA protections, such as essential benefits packages and coverage for pre-existing conditions.

At the same time, President Trump vowed to pull federal support from the subsidies that help people afford to purchase plans from the exchange.

As a result, premiums on ACA insurance exchanges may rise sharply, with negative consequences for public health. For example, women might find it more expensive to access prenatal and maternity care – something the US can in no way afford as maternal death rates are rising alarmingly. Amid a nationwide crisis of drug overdose that claimed more than 60,000 lives in 2016, coverage for substance use treatment may cost more.

The Trump administration should act to protect the right to health, not undermine it.

Author: Human Rights Watch
Posted: January 1, 1970, 12:00 am