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

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

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

"Justice for Intersex Kids" - interACT

© 2017 interACT

Once called “hermaphrodites” – a term now considered pejorative and outdated, intersex people are not rare, but their needs are widely misunderstood. Based on a medical theory popularized in the 1960s, doctors perform surgery on intersex children – often in infancy – with the stated aim of making it easier for them to grow up “normal.” The results are often catastrophic, the supposed benefits are largely unproven, and there are rarely urgent health considerations requiring immediate, irreversible intervention.

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

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

As many as 1.7 percent of babies are different from what is typically called a boy or a girl. The chromosomes, gonads, or internal, or external sex organs of these children differ from social expectations. Some intersex traits – such as atypical external genitalia – are apparent at birth. Others – such as gonads or chromosomes that do not match the expectations of the assigned sex – may manifest later in life, in some cases around puberty. Any of these children can be raised as either sex without surgery. On the other hand, genital or gonadal surgeries on intersex children too young to declare their gender identity carry the risk of surgically assigning the wrong sex.

Surgery to remove gonads can result in sterilization, and then require lifelong hormone replacement therapy. Operations to alter the size or appearance of children’s genitals risk incontinence, scarring, lack of sensation, and psychological trauma. The procedures are irreversible, nerves that are severed cannot regrow, and scar tissue can limit options for future surgery. While certain surgical interventions on intersex children are undisputedly medically necessary, some surgeons in the US perform risky and medically unnecessary cosmetic surgery on intersex children, often before they are even able to talk.

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

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

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

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

In July 2017, three former US surgeons-general wrote that they believed “there is insufficient evidence that growing up with atypical genitalia leads to psychosocial distress,” and “while there is little evidence that cosmetic infant genitoplasty is necessary to reduce psychological damage, evidence does show that the surgery itself can cause severe and irreversible physical harm and emotional distress.”

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

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