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This is what the intersex flag looks like. The flag's purple circle represents wholeness.

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Creator @anaxoxy breaks down what intersex is in 30 seconds.

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WHAT IS INTERSEX? A 30 second breakdown.  I know there’s people who follow me who don’t understand what intersex means so this is the definition I used in my speech at the Rehumanize rally before the March For Life last week. Feel free to ask me any questions you want below. God made me intersex and there is no physical way to change that. Just like anyone else’s sex it is not something you can pick or choose. My DNA was intersex from the moment of my conception.  - - - #intersex #christian #advocacy #lgbtqia #intersexy #xoxy #childofgod #bornperfect #bornthisway #prolife #antiabortion #abortionkills

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@anaxoxy
WHAT IS INTERSEX? A 30 second breakdown. I know there’s people who follow me who don’t understand what intersex means so this is the definition I used in my speech at the Rehumanize rally before the March For Life last week. Feel free to ask me any questions you want below. God made me intersex and there is no physical way to change that. Just like anyone else’s sex it is not something you can pick or choose. My DNA was intersex from the moment of my conception. - - - #intersex #christian #advocacy #lgbtqia #intersexy #xoxy #childofgod #bornperfect #bornthisway #prolife #antiabortion #abortionkills
♬ original sound - Anastasia Lindsey Rogers 🇵🇸

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Medically Unnecessary Surgeries on Intersex Children

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Medically Unnecessary Surgeries on Intersex Children

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This article explains how many doctors in the U.S. provide medical surgeries on Intersex children. Many of which are unnecessary and have unproven benefits.

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

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

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

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

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

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

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

Finding Out the Truth

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Proud Parents

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

A note on terminology

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

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

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

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

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

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

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

−Intersex man, California, October 29, 2016.

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

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

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

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

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

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

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

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

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

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

A History of Intersex Activism and Evolution of Medical Protocol

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

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."

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

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."

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

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."

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.

Non-disclosure of Intersex Status

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

−60-year-old intersex woman in New York.

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

−A gynecologist on a DSD team.

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

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

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

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

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

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

Truth-Telling and a Child's Right to Know

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

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

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

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

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

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

Changing Medical Protocols

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

A practitioner told Human Rights Watch: " We're listening to the adult patients who are telling us that they feel they were mistreated and mutilated and that's a very powerful thing." She said, "When somebody tells you what they went through at the hands of well-intentioned physicians and they feel like their rights were not respected, you can't just blow that off." 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."

Doctors and researchers have spoken out against medically unnecessary non-consensual surgeries on intersex children. For example, in 2004, a group of researchers and physicians convened by the Hastings Center in New York released an article in which they said "none of the appearance-altering surgeries need to be performed quickly."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.

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

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

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

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

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

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

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

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

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

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

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." 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. 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."

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

The Persistence of Medically Unnecessary Surgery

−Endocrinologist on DSD team

Other recent medical literature demonstrates that doctors are continuing to conduct medically unnecessary surgeries on intersex children. A 2016 paper in the Journal of Steroid Biochemistry and Molecular Biology that conducted a literature review of genital surgeries performed on intersex children between 2005-2012; the average age was 11.2 months. 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. 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.

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

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

For example, one surgeon explained:

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

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

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

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

Another provider observed:

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

A Harmful Paradigm

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

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

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

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

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

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

An endocrinologist on a DSD team told Human Rights Watch:

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

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

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

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

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

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

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

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

Irreversible Medical Interventions

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

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

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

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

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

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

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

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

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

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

Repetitive, Abusive, and Unnecessary Genital Exams

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

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

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

Violations of Privacy and Messages of Shame

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

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

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

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

The Impact of Affirmative Care

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

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

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

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

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

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

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

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

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

−A veteran intersex activist, October 25, 2016.

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

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

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

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

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

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

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

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

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

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

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

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

Wendy's Struggle Against Surgery Pressures

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

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

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

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

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

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

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

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

When they called the urologist to cancel the appointment he responded: "I would really suggest that you do it. I need to have you in my office and I need to talk with you." They immediately started engaging with support groups. " We had spent so much time feeling alone and now we had people to talk to. Someone from the support group told us we'd have to advocate for what we want. We asked for the panel of tests, which they hadn't done yet," Christine said.
***
Other parents and intersex people Human Rights Watch interviewed recounted how medical staff pressured them to undertake irreversible procedures, including surgery, and, they said, made them feel they were being unreasonable when they resisted or asked questions.

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

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

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

"Medical Bullying"

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

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

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

−A urologist, February 6, 2017.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

scarring,

incontinence,

loss of sexual sensation and function,

psychological trauma including depression and post-traumatic stress disorder,

the risk of anesthetic neurotoxicity attendant to surgical procedures on young children,

sterilization,

the need for lifelong hormonal therapy, and

irreversible surgical imposition of a sex assignment that the individual later rejects.

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

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

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

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

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

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

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

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

Thomas and Tracey echoed what Human Rights Watch heard from other parents-that the tone of the consultations suggested the doctors thought they, in rejecting surgery, were being bad parents. Tracey said:"The doctor said she would come to us begging for the surgery. Our five-month-old daughter-he could just tell that she would come to him for surgery." 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."

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

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

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

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

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

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

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

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

In contrast, a surgeon on another team said:

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

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

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

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

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

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

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

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

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

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

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

There are two fundamental elements that these arguments omit. First, while the fear of bullying and harassment of their children is a legitimate and palpable experience for parents of intersex children, the proposed surgical operations have never been demonstrated to prevent bullying or other ill-treatment. The 2016 update to the Consensus Statement acknowledges that "It has been hypothesized that body differences associated with DSDs may harm well-being," but provided no evidence. 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."

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

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

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

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

An endocrinologist told Human Rights Watch:

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

Care Principles for Transgender Children

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

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

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

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

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

Advice Without Data

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

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

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

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

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

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

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

When Parents Push for Surgery

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

−A gynecologist, March 7, 2017.

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

−A urologist, February 6, 2017.

Practitioners Human Rights Watch interviewed recounted the deep concerns parents of intersex children express upon discovery of intersex traits at birth, or referral to their clinic. Some practitioners cited broad parental concerns about how the child would grow up-ranging from gender identity outcomes to fears of homosexuality. For example, a gynecologist explained: "We have families who are very concerned that their child is gender non-conforming or has homosexual traction- because it's not OK in their community." 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."

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

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

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

The Desire for a "Normal Life"

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

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

The gynecologist told Human Rights Watch:

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

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

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

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

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

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

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

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

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

Others, however, disagreed.

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

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

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

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

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

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

An endocrinologist who treats intersex adults said:

Others disagreed. For example, one gynecologist argued:

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

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

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

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

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

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

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

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

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

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

International Human Rights Law

Torture and Other Cruel, Inhuman, and Degrading Treatment

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

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

Others were more conflicted.

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

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

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

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

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

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

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

1. Ensure the effective application of legal and medical standards following the best practices of granting informed consent to medical and surgical treatment of intersex people, including full information, orally and in writing, on the suggested treatment, its justification and alternatives;

2. Undertake investigation of incidents of surgical and other medical treatment of intersex people without effective consent and adopt legal provisions in order to provide redress to the victims of such treatment, including adequate compensation;

3. Educate and train medical and psychological professionals on the range of sexual, and related biological and physical, diversity; and

4. Properly inform patients and their parents of the consequences of unnecessary surgical and other medical interventions for intersex people.

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

1. Take the legislative, administrative and other measures necessary to guarantee the respect for the physical integrity and autonomy of intersex persons and to ensure that no one is subjected during infancy or childhood to non-urgent medical or surgical procedures intended to decide the sex of the child;

2. Guarantee impartial counselling services for all intersex children and their parents, so as to inform them of the consequences of unnecessary and non-urgent surgery and other medical treatment to decide on the sex of the child and the possibility of postponing any decision on such treatment or surgery until the persons concerned can decide by themselves;

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

4. Undertake investigation of instances of surgical interventions or other medical procedures performed on intersex persons without effective consent and ensure that the persons concerned are adequately compensated.

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

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

Children's Rights

The Committee on the Rights of the Child, which monitors the convention, has condemned surgery on intersex children nine times, including in reviews of New Zealand, South Africa, Switzerland, Chile, France, Ireland, the UK, and Nepal.

Women's Rights

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

The Right to Bodily Autonomy

The Right to Health

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

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

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

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

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

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

US Domestic Law

Sterilization

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

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

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

Female Genital Mutilation

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

Type I includes the partial or total removal of the clitoris and/or prepuce. Known as clitoridectomy, this is the most common form believed to be practiced in Iraqi Kurdistan.

Type II is a more invasive procedure that includes the partial or total removal of the clitoris and the labia minora. This can be performed with or without excision of the labia majora and is known as excision.

Type III is the most severe type of FGM, known as infibulation, which involves the narrowing of the vaginal orifice with the creation of a seal that is formed by cutting and then stitching the labia minora and/or the labia majora with or without excision of the clitoris.

Type IV includes all other harmful procedures to the female genitalia including pricking, piercing, incising, scraping, and cauterization.

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

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

Informed Consent

the procedure to be performed,

the goals or anticipated benefits of this course of treatment,

any material risks it carries,

and available alternatives to the proposed procedure.

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

scarring,

incontinence,

loss of sexual sensation and function,

psychological trauma including depression and post-traumatic stress disorder,

the risk of anesthetic neurotoxicity attendant to surgical procedures on young children,

sterilization,

the need for lifelong hormonal therapy, and

irreversible surgical imposition of a sex assignment that the individual later rejects.

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

To the United States Congress

Pass legislation to ban all surgical procedures that seek to alter the gonads or genitals of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred. The legislation should provide for the provision of appropriate support services for people who have been subjected to these operations, including access to health care and to social and psychological support​.
Until use of surgical procedures in such circumstances is outlawed, the following entities and individuals should take steps to impose an effective moratorium on their use:
To State Insurance Boards and Departments of Financial Services

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

To Private Insurance Companies

Publicly affirm and tell providers that the company will no longer reimburse for surgical procedures that seek to alter the gonads or genitals of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.

Publicly affirm that the company will reimburse for psycho-social care and support services for parents related to caring for children with atypical sex characteristics, as well as psycho-social support services for those children.

To State Legislatures

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

To the US Department of Health and Human Services

Withhold Medicaid funding for medically unnecessary surgical procedures on intersex children.

Ensure that accurate information on the potential harms of and lack of data on any claimed benefits of medically unnecessary surgeries on children with atypical sex characteristics are integrated into parenting and public health campaigns.

To the National Institutes of Health

Ensure that all NIH-funded research on intersex (DSD) populations involves input from intersex advocacy groups and is held to ethical and legal standards for use of human research subjects;

Publicly support a moratorium on medically unnecessary surgeries on children with atypical sex characteristics without the consent of the patients themselves.

Support research on the psychological and health outcomes of child and adult intersex people who have not undergone cosmetic surgeries.

Support research into the cancer risk of various intersex conditions, so that decisions about gonadectomy can be evidence-based.

Cease funding research on intersex children that involves genital exams or photography that does not directly benefit the patient.

To the American Medical Association

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

To the American Psychological Association

Issue a resolution on the treatment of intersex children recommending:

A moratorium on surgeries performed on children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred;

inclusion of psychologists/mental health care in treatment teams; and

discussion of risks, benefits, and alternatives to any proposed treatment with psychologists/mental health providers prior to any irreversible decisions.

To the Attorneys General of all 50 states

Launch an inquiry into the practice of conducting medically unnecessary surgeries on children with atypical sex characteristics without the patient's consent at state hospitals, including by collecting data from hospitals on the number of such operations performed and the names of the doctors performing them.

Consider whether any applicable statutes prohibiting FGM should be enforced in such cases.

To the American Academy of Pediatrics

Retract the support of the AAP for the 2006 Consensus Statement as an official position statement of the AAP, and replace it with a statement that is consistent with international human rights standards and with the AAP statements on Assent, Informed Permission and Consent, and on FGM. The new statement should also:

advocate to end to surgical procedures on children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.;

advise that parents be given complete information about their intersex child's condition and the risks, benefits, and alternatives of any recommended procedures;

advise that children and youth with atypical sex characteristics be given complete information about their conditions in an age-appropriate way;

recommend that doctors routinely give parents of children with atypical sex characteristics information about available peer support groups; and

recommend that parents routinely have access to mental health support and information from mental health experts about their child's condition before making irreversible decisions about their child's health.

To the World Health Organization:

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

To UNICEF:

In line with the 2015 joint statement UNICEF issued that condemned "unnecessary surgery and treatment on intersex children without their consent" as an "abuse in medical settings," issue guidance on how medical professional bodies and governments should combat such practices.

Incorporate into UNICEF's guidance on pediatric health a prohibition on all surgical procedures that seek to alter the gonads or genitals of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.

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

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

To the World Professional Association for Transgender Health:

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

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

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

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

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

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

Human Rights Watch and interACT would like to thank:

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

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This report examines the physical and psychological damage caused by medically unnecessary surgery on intersex people, who are born with chromosomes, gonads, sex organs, or genitalia that differ from those seen as socially typical for boys and girls. The report examines the controversy over the operations inside the medical community, and the pressure on parents to opt for surgery.

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@intersexwitch talks about their personal story of when they found out that they were intersex.

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Lyss has entered the chat #intersex #intersexy💜💛💜 #firstpost #firstpostever 

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@intersexwitch
Lyss has entered the chat #intersex #intersexy💜💛💜 #firstpost #firstpostever
♬ original sound - Lyss | LGBTQIA self love

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Houston City Hall illuminates purple and yellow for intersex awareness day!

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Starting tonight! pic.twitter.com/kYhRGgo7ve
— The Houston Intersex Society (@houintersex) October 25, 2020

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Leave Intersex children alone!

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If we just left intersex kids alone, we wouldn't have to need activists!

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Sign from an Intersex Protest in Kansas.

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Intersex awareness day is October 26th!

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Intersex can identify as any of the following!

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Ways to be an Ally to Intersex people!