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Intersex Infant Surgery Settlement Highlights Regulatory Gaps

Such Surgeries Should be Banned for Children

A legal settlement in South Carolina last week will award US$440,000 to a 12-year-old intersex child, born with sex characteristics not quite typically male or female, who was operated on as an infant to make his body appear like a girl. The surgery was irreversible, medically unnecessary, and traumatizing for the child, who grew up to identify as a boy.

 

 

 

A father plays with his daughter, who was born with atypical sex characteristics. Despite pressure from doctors, the parents chose not to elect medically unnecessary surgeries on their child.  © 2017 Human Rights Watch

 

While a positive outcome for the child who went through all of that, the lawsuit doesn’t do anything to address the regulatory void that allows surgeries like this to happen in the first place. Not even the hospital involved in the suit has given any indication that it intends to stop conducting such surgeries on children too young to give consent.

As Human Rights Watch documented in a report published last week, despite decades of controversy over the procedures, doctors continue to operate on children’s gonads, internal sex organs, and genitals when the kids are too young to participate in the decision – even though the surgeries are dangerous and could be safely deferred. The results are often catastrophic and the supposed benefits largely unproven. It is rare that urgent health considerations require immediate intervention.

There is no nationwide data on these surgeries, but doctors’ own clinical results suggest they remain common.

The responses of some in the medical community to our report and to the South Carolina settlement are disturbing. True, the American Academy of Pediatrics welcomed our research and the American Medical Association board of trustees and three former US surgeons-general have recommended an end to medically unnecessary surgeries on intersex kids.

But the reaction of individual physicians underscores how urgent the need to regulate these surgeries really is.

For example, reacting to the South Carolina settlement, a University of Michigan pediatrics professor said he does not question the life-long, negative consequence of surgery in individual cases, but remains unconvinced the operations should be outlawed because, “What I do question is whether their experiences are generalizable to others.” That argument turns logic on its head – as though the dearth of reliable data on precisely how many kids have suffered harm because of these surgeries was a reason to keep doing them. Just as bad, a University of California, San Francisco surgeon misconstrued the operations as medically necessary and intersex bodies as abnormal because the surgeries “restore normal anatomy.” And a doctor at Children’s Hospital Colorado said physicians would feel unduly restricted by a ban” on these surgeries.

The simple truth is that regulating these surgeries would protect children from nonconsensual medically unnecessary operations that could harm them. Already, a law in Washington state, together with a policy at Seattle Children’s Hospital, has forced the deferral of one such medically unnecessary surgery on an intersex child too young to consent – even though both parents and physicians wanted to proceed.

Certainly it’s not an undue restriction to apply the basic principle of “do no harm” to intersex children. 

 

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