A Changing Paradigm – US Medical Provider Discomfort with Intersex Care Practices

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.

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

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

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

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

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

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

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

For more than 50 years, the medical community in the United States has often defaulted to treating intersex children by conducting irreversible and unnecessary surgeries. Even after two decades of controversy and debate, there remains no research showing that early, medically unnecessary surgery is helpful to the intersex child. Nonetheless, to date, none of the clinics we surveyed have firmly instituted a moratorium on such operations. The evidence is overwhelming that these procedures carry risk of catastrophic harm. And while increasing numbers of doctors believe it is wrong to conduct these procedures, recent data demonstrate that many clinics continue to do so. Alice Dreger, a bioethicist who has written two books on intersex issues and served on a National Institutes of Health multi-site research project before resigning in protest in 2015, wrote of her two decades of engagement on the intersex surgery controversy: “While many clinicians have privately shared my outrage about these activities, in public, the great majority have remained essentially silent.”

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

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

Human Rights Watch and interACT believe this approach has it exactly backwards: the experience of those who have undergone the surgery and principles of medical ethics suggest that unless and until there is outcome data establishing that the medical benefits of specific surgical procedures on infants and young children outweigh the potential harms, they should not be used.

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

While some would argue that surgical practice has improved in the past decades, the fact remains that few attempts have been made to assess the long-term outcomes of these interventions. The psychological damage caused by intervention is just as staggering, as evidenced by generations of intersex adults dealing with post-traumatic stress disorder, problems with intimacy and severe depression. Some were even surgically assigned a gender at birth, only to grow up identifying with the opposite gender.

Others have offered similar testimony. Dr. Deanna Adkins, the Director of the Duke University Center for Child and Adolescent Gender Care, made an expert declaration to oppose North Carolina’s HB2, a sweeping statewide law repealing non-discrimination ordinances protecting lesbian, gay, bisexual, and transgender (LGBT) people and barring transgender people from shared facilities. In her statement, referring to intersex children, Dr. Adkins argued:

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

An endocrinologist on a DSD team told Human Rights Watch: “That’s an adage in medicine—above all do no harm.” He added: “I don’t think you’re going to find anybody that runs a DSD clinic that would argue with the fact that outcomes are better when you delay intervention in general.” A DSD specialist Human Rights Watch interviewed argued that “there’s probably rare if any situations where surgery is absolutely necessary.” She said doctors needed “clear guidelines, clear practice standards”—what she called “general principles of care and make it very clear that the emerging data is in favor of not intervening.”

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

Accordingly, Human Rights Watch and interACT are urging the AMA, the American Academy of Pediatrics, and other medical bodies, in line with the oath to “Do No Harm,” to support a moratorium on all surgical procedures that seek to alter the gonads, genitals, or internal sex organs of children with atypical sex characteristics too young to participate in the decision, when those procedures both carry a meaningful risk of harm and can be safely deferred.