Summary

Historically, when children with atypical sex characteristics were born in the United States, the people around them—parents and doctors—made their best guess and assigned the child a sex. Parents then reared them per social gender norms. Sometimes these people—intersex people—experienced harassment and discrimination as a result of their atypical traits. But many lived well-adjusted lives as adults. During the 1960s, however, based largely on the unproven recommendations of a single prominent psychologist, medical norms in the US changed dramatically. Doctors began recommending surgical solutions to the supposed “problem” of intersex traits—internal sex organs, genitalia, or gonads that do not match typical definitions of male and female. This medical paradigm remains the status quo nearly everywhere in the world today.

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

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

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.

Background

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

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

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

A practitioner told Human Rights Watch: “We’re listening to the adult patients who are telling us that they feel they were mistreated and mutilated and that’s a very powerful thing.” She said, “When somebody tells you what they went through at the hands of well-intentioned physicians and they feel like their rights were not respected, you can’t just blow that off.”[1]  Another practitioner said: “And a lot of advocacy work from patients to speak with the physicians at medical conferences and talk about their experience just made a huge difference—I think that's certainly a big part of where I learned about it and got a better understanding of what the outcomes are really like and what the repercussions are for the patients as adults. You know, because as a pediatrician, it's hard to know what happened to them 25 years down the road.”[2]

The impact has been tangible for some practitioners. An endocrinologist explained: “Many years ago, we thought we were doing the best thing for these patients. And then we started listening to the patients themselves.” Now, he said, “We've evolved our approach. We used to think that we had to make a decision immediately. We know that that's not the case and there's time for families to sort this out.”[3]

Doctors and researchers in recent years have increasingly spoken out against medically unnecessary non-consensual surgeries on intersex children. For example, in a 2017 article published in the Journal of Pediatric and Adolescent Gynecology, Wiebren Tjalma, a surgeon in Belgium, documented a case of genital surgery on an adult woman with Congenital Adrenal Hyperplasia (CAH). Dr. Tjalma argued that “Genital correction surgery for CAH at an older age was easier, could be done in 1 step, and enabled the preservation of orgasm.”[4] Her results were challenged by two other doctors in a letter to the editor, in which they asserted that the surgeries should be conducted much earlier in an effort to prevent discomfort.[5] In a response letter, Tjalma explains: “Current practice is like a ritual and not on the basis of any evidence. Dare to change your thoughts about the preservation of erectile bodies. Women should not have mutilating surgery if there is no evidence. The quality of our sex life is important.”[6]

Going further back, in 2004, a group of researchers and physicians convened by the Hastings Center in New York released an article in which they said “none of the appearance-altering surgeries need to be performed quickly.”[7] In 2006, a consortium of patient advocates, parents, and medical providers published a set of clinical guidelines that urged “delay [of] elective surgical and hormonal treatments until the patient can actively participate in decision-making about how his or her own body will look, feel, and function,” promoted psychosocial support for families, and offered tools for professionals to support parents without unnecessary surgery.[8]

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

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

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

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

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

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

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

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

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

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

The Evolution of Medical Understandings and Protocol

1996: The American Academy of Pediatrics (AAP) publishes a statement saying: “The Academy is deeply concerned about the emotional, cognitive, and body image development of intersexuals, and believes that successful early genital surgery minimizes these issues.”[13]

1997: Milton Diamond and Keith Sigmundson publish a paper denouncing early genital surgery on intersex children, based on David Reimer’s outcomes. They write: “We suggest referring the parents and child to appropriate and periodic long-term counseling rather than to immediate surgery and sex reassignment, which seems a simple and immediate solution to a complicated problem.”[14] David Reimer, who was surgically assigned female after a circumcision accident by Dr. John Money at Johns Hopkins, and whose case bolstered the rationale for early genital surgery, publicly renounces Dr. Money’s experiment.[15]

1998: The Gay and Lesbian Medical Association (now GLMA: Health Professionals Advancing LGBT Equality) passes a policy resolution calling for research on outcomes of genital-normalizing surgery, and full disclosure of risks and alternatives by physicians to parents of intersex children considering surgery.[16]

2000: The AAP issues a statement referring to the birth of an intersex child as “a social emergency” and urging early surgery, while recognizing that “few studies have been done that address the social, psychological, and sexual outcomes…”[17] 

2004: The National Institute of Diabetes & Digestive & Kidney Diseases states: “[t]here is currently a crisis in clinical management of children with disorders of sexual differentiation, and it has received considerable public attention. It stems from two issues. First, for some of these disorders, there are insufficient data to guide the clinician and family in sex assignment. Second, the optimal application of surgery and its timing remain unclear.”[18]

2006: The Consensus Statement on the Management of Intersex Disorders acknowledges the lack of meaningful research and calls for further studies, while still allowing for genitoplasty, including clitoral reduction. This statement is adopted as a position statement of the AAP.[19]

2010: Thirty-two academicians write to the Office of Human Research Protections (OHRP) and the US Food and Drug Administration (FDA) calling for an investigation into alleged human research violations involving intersex fetuses and children.[20]

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

2011: The National Institutes of Health gives a founding grant to form the DSD Translational Research Network (DSD-TRN) to: “Assess and respond to the specific needs of DSD patients by: developing psychosocial assessment tools specific to the needs of DSD families; developing tools to minimize the need for genital photography; assessing efficacy of and compliance to standards-of-care; discovering new genes causing DSDs.”[22]

2011: The World Professional Association for Transgender Health (WPATH) releases revised Standards of Care that include a section calling for careful staging of medical interventions for transgender children and youth, and the delay of irreversible procedures. However, the policy allows for early surgical interventions on intersex children.[23]

2012: A paper in the Journal of Pediatric Urology concerning the “[t]iming and nature of reconstructive surgery for disorders of sex development” explains “The ideal timing and nature of surgical reconstruction in individuals with…DSD is highly controversial… evidence-based recommendations still cannot be made,” and recognizes that “clitoroplasty is essentially a cosmetic procedure…surgery carries the risk of disruption of the nerve supply of the clitoris.”[24]

2013: The AAP advocates psychological care prior to any desired gender-affirming surgical intervention in the case of transgender youth, but does not address similar procedures on intersex children too young to express an opinion.[25]

2013: The World Health Organization publicly opposes early genital or sterilizing surgeries on intersex youth in its report, “Eliminating forced, coercive and otherwise involuntary sterilization.”[26]

2014: The provisional section on Lesbian, Gay, Bisexual, and Transgender Health and Wellness of the AAP publishes “Explaining Disorders of Sex Development & Intersexuality,” which states: “If it is not medically necessary, any irreversible procedure can be postponed until the child is old enough to agree to the procedure (e.g. genital surgery).”[27]

2015: Patient advocates and bioethicists publicly resign from the DSD-TRN, citing frustration with the ongoing use of medically unnecessary surgeries on intersex children, use of genital photography of children in research, and, as one member put it in her resignation: “Being asked to be a sort of absolving priest of the medical establishment in intersex care.”[28]

2016: The American College of Obstetricians and Gynecologists issues a committee opinion cautioning that genital surgery may not be appropriate for every adolescent with “abnormalities” and that counseling is recommended prior to surgery.[29]

2016: Physicians publish “Global Disorders of Sex Development Update since 2006,” stating: “[t]here is no evidence regarding the impact of surgically treated or non-treated DSDs during childhood for the individual, the parents, society or the risk of stigmatization…[t]here is still no consensual attitude regarding indications, timing, procedure and evaluation of outcome of DSD surgery.”[30]

2016: The Gay and Lesbian Medical Association takes an official position recommending delay of all medically unnecessary surgery on intersex children until the child can participate in decisions regarding their body.[31]

2016: The American Medical Association Board of Trustees issues a report recognizing that “DSD communities and a growing number of health care professionals have condemned … genital ‘normalizing,’ arguing that except in the rare cases in which DSD presents as life-threatening anomalies, genital modification should be postponed until the patient can meaningfully participate in decision making,” and recommending adoption of a resolution supporting treatment that, “except when life-threatening circumstances require emergency intervention, defers medical or surgical intervention until the child is able to participate in decision making.”[32]

2016: In its final rule issued for the Affordable Care Act, the Office for Civil Rights (OCR) of the Department of Health and Human Services states that “the prohibition on sex discrimination extends to discrimination on the basis of intersex traits or atypical sex characteristics. OCR intends to apply its definition of ‘on the basis of sex’ to discrimination on these cases.”[33]

2017: Three former US surgeons-general issue a statement calling for a moratorium on medically unnecessary surgeries on intersex children too young to participate in the decision, noting that “Those whose oath or conscience says ‘do no harm’ should heed the simple fact that, to date, research does not support the practice of cosmetic infant genitoplasty.”[34]

Anxieties About Social Outcomes Drive Surgery

Nationwide data on how prevalent surgeries are on intersex children do not exist. However, available data sources show that doctors continue to perform medically unnecessary cosmetic surgical procedures on children with atypical sex characteristics in the United States—often before they are one year of age. US government data compiled from several voluntary-reporting databases, for example, show that in 2014—the most recent year for which data are available—clitoral surgery was reported 70 times. Many hospitals do not participate in these databases.[35]

Other recent medical literature demonstrates that doctors are continuing to conduct medically unnecessary surgeries on intersex children. A 2016 paper in the Journal of Steroid Biochemistry and Molecular Biology conducted a literature review of genital surgeries performed on intersex children between 2005 and 2012; the average age was 11.2 months.[36] In a 2016 paper published in the Journal of Pediatric Urology, doctors examined a cohort of 37 pediatric patients with atypical genitalia from children’s hospitals across the country. Of the 37 cases, 35 opted for cosmetic surgery on their children and two did not.[37] A 2017 paper in The Journal of Urology documented that 25 of 26 intersex babies, whose parents were recruited for the study from 10 DSD centers of excellence across the country, were subjected to genital surgeries.[38]

While published data show that medically unnecessary surgeries are being conducted on intersex children, practitioners interviewed for this report often reported that they observed general trends toward doing fewer surgeries (though they did not always specify which procedures). While some said they insisted on multiple counseling sessions with parents who were considering medically unnecessary surgeries, none of the healthcare providers Human Rights Watch interviewed said their clinic had instituted a moratorium on all medically unnecessary procedures.

Many providers interviewed for this report described the information they shared with parents as based on hypotheticals about what it would be like to raise an intact child, and “clinical expertise,” not data on medical outcomes. This pattern is also reflected in a 2016 update to the 2006 “DSD Consensus Statement,” which includes a survey of 32 experts—mostly surgeons—on guidelines for surgeries. The document notes: “There is still no consensual attitude regarding indications, timing, procedure and evaluation of outcome of DSD surgery. The levels of evidence of responses given by the experts are low, while most are supported by team expertise.”[39]

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

Even after two decades of controversy and debate, there remains no research showing that early, medically unnecessary genital surgery is helpful to the intersex child. Nor is there data to predict gender identity outcomes with confidence in many intersex conditions—meaning that doctors are sometimes conducting sex assignment surgeries that the children will later reject.[40] As documented in our July 2017 report, this can mean doctors give parents information about gender identity, surgical risks, and the reversibility of certain procedures that have no basis in medical literature.

Practitioners Human Rights Watch interviewed recounted the deep concerns parents of intersex children express upon discovery of intersex traits at birth, or referral to their clinic. Some practitioners cited broad parental concerns about how the child would grow up—ranging from gender identity outcomes to fears of homosexuality. For example, a gynecologist explained: “We have families who are very concerned that their child is gender non-conforming or has homosexual attraction— because it’s not OK in their community.”[41] But, she said, the majority of parental concerns are more immediate and practical: “We have families who are terrified of having their daughter’s diaper changed at church or by a babysitter.” [42]

A urologist who works with a DSD team told Human Rights Watch that parents’ fears about their children’s genitalia often drive the decision to select surgery. “The phrase ‘middle school locker room’ gets tossed around quite a bit,” he said.[43] As we found previously some parents who found their way to peer support groups found their fears greatly relieved when they talked to more experienced parents, and learned useful strategies for dealing with the situations they dreaded.[44]

An endocrinologist on a DSD team said the most common fears she hears from parents with children who have atypical external genitalia relate to diaper changes, bathing suits, and, for boys, being able to stand to pee. “A lot of people just will not let anybody else change their child's diaper or put their child in daycare or preschool until they've had surgery,” she said.[45] This endocrinologist said such families tend to focus on the intersex traits thinking “this is a medical problem, we just need to fix a medical problem,” an observation we heard from other practitioners as well. She explained: “I think that they're very reluctant to acknowledge things beyond the medical side of it. As endocrinologists and psychologists—we’re not reluctant to bring those [non-medical] things up with families. However, I really do think most parents of infants still see surgery as a quick fix option no matter what we say.”

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

The girl with the big clitoris—do we make it look good before puberty or do we wait? In a perfect world, no of course we'd wait. But it's not a perfect world and parents know that—parents say: look I'd love to live in a place with that kind of body and not get any grief…[46]

Another doctor on a DSD team said: “One of the surgeries that I think makes people very angry is the clitoroplasty, because it’s just an enlarged clitoris and there’s no function that you’re serving by making it smaller—you’re just treating the eye of the beholder.”[47] Another doctor explained that she understood the persistence of medically unnecessary surgeries in the field as one of inertia and resistance to change: “If this is your career as this is part of your professional identity, if this is a specialty you've become known for, it is very hard to back away from it,” she said. “I think that there are going to be a few doctors…who really built a career on providing normalizing surgeries. It's going to be very hard to back away and say, ‘yeah there's maybe another way maybe a better way to care and support these families.’”[48]

A dearth of data on outcomes for intact children does not support defaulting to conducting irreversible and medically unnecessary surgeries that carry the potential for harm. Indeed, the available medical evidence points overwhelmingly in the opposite direction: that the well-documented harms of these operations should be a primary factor in doctors’ recommendation to defer them until the patient can understand and consent to (or refuse) the procedure. Or, as the former US surgeons-general argued in their 2017 article, “our review of the available evidence has persuaded us that cosmetic infant genitoplasty is not justified absent a need to ensure physical function,” explaining that the belief that surgery can lead to better psycho-social outcomes is based on “untested assumptions rather than medical research.”[49]

Doctors, in their clinical conversations with parents, are in a good position to correct these assumptions and put social hypotheticals into better perspective. “The pediatricians are in a position of power. And if it’s an issue of parents being scared, that is the problem that has to get solved. It’s not really a matter of if you do surgery—that doesn’t make any sense, that’s not solving anything,” an endocrinologist told Human Rights Watch. “There are no data that it’s solving anything, and there’s ample evidence that people who underwent the surgery overwhelmingly think that it shouldn’t be done.”[50] He explained:

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

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

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

Providers Increasingly Hesitant to Recommend Surgery

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

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

Eight years ago, I did irrevocable damage to the first intersex person I ever met, taking out the gonads of a 17-year-old girl who found out after she never got her period that she had XY chromosomes, with internal testicles instead of ovaries and a uterus…. While some would argue that surgical practice has improved in the past decades, the fact remains that few attempts have been made to assess the long-term outcomes of these interventions. The psychological damage caused by intervention is just as staggering, as evidenced by generations of intersex adults dealing with post-traumatic stress disorder, problems with intimacy and severe depression. Some were even surgically assigned a gender at birth, only to grow up identifying with the opposite gender. The notion of performing an irreversible procedure on a child—one that will likely render her incapable of achieving sexual pleasure in the future—is utterly abhorrent to me, as an insult on the body autonomy of a minor who is, by definition, incapable of giving informed consent.[52]

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

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

Individual providers also explained the increased caution with which they and their colleagues approach medically unnecessary surgeries. For example, a urologist told Human Rights Watch, “I think we're being very cautious about anything that removes tissue.” She said her clinic sets a strict six-month minimum age for medically unnecessary surgeries, which they communicate to parents immediately. “We just explain that we really don't do any elective surgery for babies for six months, period. We reassure them that there is not going to be anything bad that happens to the child waiting for six months.”[53] However, this urologist clarified that this has not resulted in a complete end to cosmetic operations on children over six months old: “We're doing very, very few feminizing surgeries in general…. Since I've been here we've only done a few and I've been here three years.” [54]

An endocrinologist on a DSD team said he observes “a general trend of ‘if in doubt don't do anything.’” He said: “We try to emphasize that while we're sorting things out it's best to leave things alone. If there's no urgency from a medical standpoint it's best to leave things as they are and what we have we're finding as time goes on that many of the patients are very comfortable with that.” He linked that to medical ethics: “That's an adage in medicine—above all do no harm.” He added: “I don't think you're going to find anybody that runs a DSD clinic that would argue with the fact that outcomes are better when you delay intervention in general.”[55]

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

If I tell you I'm going to operate on you, but if we don't there's a 50 percent chance you'll never need the operation…. If you just give that much information to a surgeon they're going to say, “why the hell would I do it?” And most patients would also say the same thing. And so in the cases of CAIS [Complete Androgen Insensitively Syndrome], I advocate that surgery—vaginoplasty in particular since it is often required for these women who want to have an active sexual life—should be done when this person can say they want to use their vagina for sex.[56]

However, an endocrinologist on a DSD team at a regional referral hospital said that, while she observed many of her peers in DSD care speaking publicly about a decrease in medically unnecessary surgeries on intersex children, “Most patients at our center have cosmetic surgery to their external genitalia.” She said: “The main two groups that don't are the kids who are being raised female who have very mild virilization, and then the more developmentally delayed kids.”[57]

A psychologist on a DSD team told Human Rights Watch his advice to parents is: “Probably less is more…. If you don't absolutely need to do surgery, don't do it.” He said: “My voice is always in that direction and I would say the rest of my team is moving in that direction.” However, he said: “There are surgeries being done all around the country.”[58]

A mental health provider on another DSD team said she observes similar patterns—and surgeries continue. The problem, she explained to Human Rights Watch, is that some providers believe they are providing sufficient—and sufficiently clear—information, while parents fail to comprehend what is happening. She said:

I’ve seen surgeons present to families in a way they couldn’t possibly understand, and then not present doing nothing as a viable option...and then think that they went through a full informed consent process. And clearly, they had not. They presented it basically as: ‘You can medically neglect your child, or you can do surgery…’ and used words that I didn’t even understand, then gave them a form to sign and they want to do it because he has a white coat on and they’re scared.[59]

Other practitioners spoke of cases when they felt they needed to reject parents’ demands for surgery. One endocrinologist explained that while such instances were rare, “Sometimes we have to say: ‘I'm sorry. We're not going to do that here. You can go to another surgeon if you would like to do that but we don't think that it's the right thing for your child at this time.’”[60] A urologist Human Rights Watch interviewed offered an example of a case in which he convinced parents to decline genital surgery. The patient was an 8-year-old with CAH whose genitals were, the doctor said, “amazingly virilized.” According to the doctor, “in talking with this kid, they very clearly did not fall into one gender role or another…. So my very strong recommendation to them actually was ‘we should really think about putting in a hormone blocker in her and just [give] her some time.’” The doctor explained to Human Rights Watch:

From my perspective, [a hormone blocker] is never a wrong answer because you buy time. If you look at the transgender kids—because there really isn't any data on this in DSDs—just putting on a hormone blocker actually drops her suicidality by about 80, 90 percent. So to me this is a no brainer. You know moving ahead with a massive clitoral reduction on this kid … who may or may not want to be a boy or may or may not want to be a girl—that's an irreversible step. And to me that is a horrible disservice to this kid. [61]

Some providers Human Rights Watch interviewed explained how they invested time in debunking myths that parents believed. For example, a mental health practitioner on a DSD team cited the “middle school locker room” fear as an example, saying he asks parents whether they actually showered naked in front of their peers or know that it is mandatory in their local schools. “There was a time [when that was common] perhaps but it is much less so now. And certainly children can avoid having to do that for so many reasons that do not draw attention to themselves,” he said.[62] Indeed this is a commonly cited fear[63]—though not necessarily one based in reality.[64]

A urologist on a DSD team said they try to steer the parents’ narrative away from “Hey, can you fix this?” She said: “I don't think that for anything elective it makes any sense to make an immediate decision. We try to explain that there is no urgency…. So the first step is just letting that sink in with the family because I don't think it occurs to most of them that not having surgery is even an option.” Her clinic presents surgery as an option by giving examples: “We say: ‘Here are some of the reasons people choose surgery. Here are some of the reasons people choose not to.’” However, she observes: “I don't think there's any way that we can be totally non-biased because we're medical people and we talk in a certain way.”[65] Another urologist echoed this sentiment, saying: “There's no such thing as a value-free consultation.”[66]

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

I can't think of a case right now where [doing medically unnecessary surgery] would be applicable but I don't want to be the one that says ‘never’...I'm just never comfortable with ‘never’...I don't know. I honestly can't think of a case where I would be likely [to recommend a medically unnecessary surgery]. I mean, ‘no’ would be the right answer most of the time—probably all of the time—but I don't want to find myself in a position one day of: ‘Well this is really important to have done.’ But I can't imagine one either.[67]

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

When we’re trying to force people into cultural normative, hetero-normative situations, there’s a high chance that we’re going to make some major mistakes and harm people irreparably.[68]

Parents Anxious About Being Misled

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

     —Pediatric surgeon[69]

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

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

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

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

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

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

Thomas was upset. As a clinician, he had access to medical databases, so he researched the topic. “It's not 75 percent because if that's out there somewhere it is well-hidden. I have scoured every database that I could find.” There is no reliable evidence that genital surgery will reduce rates of UTIs in children with intersex traits— in fact, surgery may increase UTI risk.[70]

Thomas and Tracey echoed what Human Rights Watch heard from other parents—that the tone of the consultations suggested the doctors thought they, in rejecting surgery, were being bad parents. Tracey said: “The doctor said she would come to us begging for the surgery. Our five-month-old daughter—he could just tell that she would come to him for surgery.”[71] Meanwhile, Thomas said: “Nobody told us about the effects, the potential effects of the anesthesia on a child under the age of two years let alone a six-month-old, or the possibility of frequent revision surgeries—which is really the professional advice we wanted to get.”

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

The world can be a hard place for people who are different and I am not naive to the fact that this could create some social difficulties for my daughter. However, I don't think the solution is to subject her to anesthesia and perform a surgery without her consent that's irreversible.[72]

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

We aren’t inclined to think about our kids as humans who are going to be adults one day. We are consumed with protecting our child. If a doctor says your child is going to have a really hard time growing up with genitals that look different and I can do this surgery that will make everything fine and they won’t remember it, you’re going to say OK.[73]

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

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

Judy and Carl agreed to the surgery when their child was 11 months old, in April 2010. The procedure required a follow-up surgery eleven months later that resulted in two post-operative infections. Two days after the family was released from post-operative infection care, a letter arrived in the mail telling them their son, Jack, had tested positive for Partial Androgen Insensitivity Syndrome (PAIS). This meant that, according to medical data, his future gender identity was uncertain and his body would not respond like most boys to testosterone as he grew up. Judy told Human Rights Watch: “After we’ve now gone through two surgeries and we had no idea of what to think of for the next 20 years ... what’s damaged or what’s not ... the whole spectrum of horror.”

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

 “We are smart enough to rationalize things and think through the outcomes,” said Judy, wishing that they had had better information and support during the decision-making process. “It’s frustrating, we’re angry,” said Carl. “We beat ourselves up about this” Judy explained: “I want to give [the doctors] the benefit of the doubt. I can’t definitively say that they didn’t think the surgery was the right thing to do. But they certainly did not have the information they needed—even a diagnosis—and nobody interjected to slow everything down.” Carl said:

The doctors told us it was important to have the surgery right away because it would be traumatic for our child to grow up looking different. What’s more traumatic? This sort of operation or growing up a little different?[74]

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

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

Intersex Children Can Thrive Without Surgery

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

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

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

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

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

Emerging data, while limited, support these observations. A 2017 paper published in the Journal of Pediatric Urology documented, in follow-up with seven girls with CAH up to age eight who did not have surgery, that “girls and their parents have not expressed significant concerns regarding genital ambiguity.” The authors conclude: “With these encouraging data at hand, we propose to formally address levels of anxiety, adaptation and quality of life during childhood, with an ultimate goal to assess long- term satisfaction and effects on sexuality through deferring genital surgery.”[83]

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

While the DSD team supported the parents’ decision for gonadectomy, hospital policy and interpretation of Washington state law prohibits parents from providing informed consent for any procedure that removes the reproductive organs of a minor (Disability Rights Washington, 2012; Seattle Children’s Hospital Bioethics Policy, 2013). Exceptions are allowed if they pose a health risk, such as the oncogenic risk posed by dysplastic gonads and/or if infertility is considered inevitable with standard treatment (Seattle Children’s Hospital Bioethics Policy, 2013). A court order authorization must be obtained for any other exception. Given the knowledge available on 5α- R2D and the patient at the time, the medical team felt this policy precluded them from offering gonadectomy to the patient without a court order.[84]

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

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

Recommendations

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

To the American Medical Association

• As a matter of urgency, pass the proposed resolution as recommended in the AMA Board of Trustees report 7-I-16, that “optimal management of DSD through individualized, multidisciplinary care…: (1) seeks to foster the well-being of the child and the adult he or she will become; (2) respects the rights of the patient to participate in decisions and, except when life-threatening circumstances require emergency intervention, defers medical or surgical intervention until the child is able to participate in decision making; and (3) provides psychosocial support to promote patient and family well-being.”[86]

To the American Psychological Association

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

To the American Academy of Pediatrics

• Retract the support of the AAP for the 2006 Consensus Statement as an official position statement of the AAP, and replace it with a statement that is consistent with international human rights standards and with the AAP statements on Assent, Informed Permission and Consent, and on FGM. The new statement should also:
  • advocate to end to surgical procedures on children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred;
  • advise that parents be given complete information about their intersex child’s condition and the risks, benefits, and alternatives of any recommended procedures;
  • advise that children and youth with atypical sex characteristics be given complete information about their conditions in an age-appropriate way;
  • recommend that doctors routinely give parents of children with atypical sex characteristics information about available peer support groups; and
  • recommend that parents routinely have access to mental health support and information from mental health experts about their child’s condition before making irreversible decisions about their child’s health.[87]

To the World Health Organization:

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

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

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

To the World Professional Association for Transgender Health:

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

Acknowledgments

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

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

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