Pressure mounts to curtail surgery on intersex children
NEW YORK Children whose sexual characteristics don’t neatly align with the norm have for decades faced surgery to rearrange their anatomy to resemble that of more typical boys and girls — long before they were old enough to have a say in the decision.
But now the practice is under assault, as never before. The American Medical Association is considering a proposal discouraging it. Three former U.S. surgeons general say it's unjustified. And on Tuesday, Human Rights Watch and Inter-ACT a group advocating for intersex youth — are releasing a detailed report assailing the practice and urging Congress to ban it.
“The results are often catastrophic,” says the report, asserting that the surgeries “can inflict irreversible physical and psychological harm.”
“The pressure to fit in and live a ‘normal’ life is real,” said Kyle Knight, a Human Rights Watch researcher who wrote the report. “But there is no evidence that surgery delivers on the promise of making that easier.”
One of multiple reasons for the concern: Some intersex children may undergo surgery aimed at assigning them as male or female, yet grow up to identify as the other sex — a potentially traumatic situation.
Intersex is an umbrella term encompassing various conditions in which internal sex organs and external genitalia develop differently than for a typical boy or girl. Experts say roughly one of every 2,000 newborns has so-called differences of sex development that might prompt a doctor's recommendation for surgery or other medical intervention.
Internationally, there’s been vocal opposition to such surgeries. In 2015, they were condemned by several United Nations agencies, and Malta became the first country to ban them.
Major U.S. medical associations haven’t gone that far, but the Human Rights Watch/InterACT report urges them to toughen their policies. The American Academy of Pediatrics says it’s reviewing the issue, and wants parents to understand the risks and benefits of any course of action. The AMA’s Board of Trustees is proposing a new policy statement urging doctors to defer intersex surgery on infants and young children “except when life-threatening circumstances require emergency intervention.”
Adding to the momentum was a statement in June from former surgeons general Joycelyn Elders, David Satcher and Richard Carmona, who said the surgery “is not justified absent a need to ensure physical functioning,” they wrote. “We hope that professionals and parents who face this difficult decision will heed the growing consensus that the practice should stop.”
There are no comprehensive statistics on intersex surgeries. The new report says most of the 21 health professionals who were interviewed suggested that medically unnecessary surgeries were becoming less common, but none said their clinic had stopped doing them altogether.
Even as the new report was being compiled, it came under fire from the CARES Foundation, which advocates on behalf of families with children born with abnormal genitalia due to a condition called congenital adrenal hyperplasia, or CAH.
Girls with this condition sometimes undergo reconstructive surgery, often to reduce the size of the clitoris. The foundation, which has more than 20 physicians as advisers, asserted that the new report represents an unwarranted attempt to eliminate that option.
“The choices available to parents and patients should not be limited,” the foundation said. “Medical decisions are difficult enough for parents without having to contend with the moral and philosophical agendas of certain movements.”
For families with intersex children, one welcome development has been the formation of specialized teams at some hospitals that address a wide range of physical and psychological concerns.