Earlier this year, some leading specialist pediatricians told me that they routinely advise parents of infants to consider surgery on their baby’s sex organs to decrease suicide risk later in life. The claim is not based in medical data, and it’s unethical for a doctor to offer an understandably confused and concerned new parent irreversible and entirely non-urgent surgery to avert a hypothetical future harm.
So why is it happening?
I spent the past year interviewing intersex adults, parents of intersex kids, and doctors who specialize in treating them. Once called “hermaphrodites,” intersex people make up nearly 2 percent of the population—their chromosomes, gonads, and sex organs don’t match up with what we consider typically male or female. One of the reasons we hear so little about intersex people is that based on a now-invalidated medical theory popularized in the 1960s, doctors often perform surgery on them in infancy. They generally say the goal is to make it easier for kids to grow up “normal.” But as our recent report showed, the results are often catastrophic, the supposed benefits are largely unproven, and there are rarely urgent health considerations requiring immediate, irreversible intervention. One of the many risks of surgery is assigning the wrong gender.
“It is harmful to make sex assignments based on characteristics other than gender identity,” Dr. Deanna Adkins, the director of the Duke University Center for Child and Adolescent Gender Care testified in a North Carolina court: “[I]n 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.”
A groundswell is taking place right now to put an end to the risks Dr. Adkins points out.
My organization, Human Rights Watch, is joined by the United Nations, the World Health Organization, Amnesty International, every major LGBT legal organization in the US, three former US surgeons general, and all intersex-led organizations around the world in calling for an end to medically unnecessary non-consensual surgeries on intersex kids. The American Medical Association Board of Trustees this year recommended respect for intersex children’s rights to autonomy and informed consent.
But some physicians refuse to accept that the status quo is harmful.
Today, on Suicide Prevention Day, the interviews with the two doctors who advocated early surgery are ringing in my ears.
One pediatric urologist acknowledged that it was possible to raise a child as either gender without surgery. But, citing transgender suicide attempt rates, he said: that if he were to abstain from sex assignment surgery on intersex children, it would result in “97 percent of [his patients having] gender dysphoria.” He said this puts him in a difficult position. He explained: “That carries a 40 percent risk of suicide. Not thinking about suicide. Suicide. Actually doing it, or trying to do it. That is an astoundingly large number…So that's a hell of a burden.”
To suggest that sex assignment surgery on an intersex kid saves them from a future suicide attempt is not only intellectually dishonest, but it skirts the actual issue.
First, while the fear of harassment of their children is a legitimate and palpable experience for all parents, surgical operations on intersex children have never been demonstrated to prevent bullying. True, data show that transgender people in the US carry a 41 percent risk of a suicide attempt in their lifetime, compared with 4.6 percent of the overall US population. But the risk is driven by factors that include discrimination and harassment—and in some cases ill-treatment by doctors— not by whether their genitals match their gender identity.
Second, performing surgery on intersex kids does not ensure their genitals will match their identity. Studies have found rates of gender assignment rejection among intersex children ranging from 5 to 40 percent, depending on the condition. Contrary to that urologist’s assertion that leaving his intersex patients intact would cause gender dysphoria, irreversible surgery may leave them with bodies that don’t match their identities.
Third, children should have the right to negotiate these complex social dynamics for themselves as they grow, and decide when and whether to have surgery—instead of having these decisions forced upon them. A recent investigative report from the Dominican Republic, where most intersex kids are left intact, showed that social awareness, and parent and teacher response help mitigate bullying —as with any other kid.
It is indeed a hell of a burden—but not for the doctor.
Rather it’s a burden on the parents of intersex kids who told me they felt bullied by doctors into choosing these high-risk cosmetic surgeries. And it’s a burden for the kid who will grow up permanently physically scarred and thinking of their body as shameful, in need of “fixing” by a scalpel.
Intersex kids deserve better—especially from doctors who specialize in their care. And no parent should have to wonder if a pediatrician is telling the truth.
We need to outlaw these surgeries on kids too young to decide for themselves that they want them—except in instances of true, data-driven medical need—to protect children from harm that can endure for the rest of their lives. It would protect parents from the mendacious wordplay that continues in clinics today. And it would allow intersex kids to thrive and get support when they need it.
As a father of a two-year-old with an intersex condition told me: “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.” He and his wife visited multiple specialists, many of whom threatened social outcomes based on hypothetical understandings of what it might be like to grow up with a body that’s a little different from most people’s. The father said: “I don't think the solution is to subject her to anesthesia and perform a surgery, without her consent, that's irreversible.”
Parents are looking for medical advice from providers charged with interpreting data and protecting life and limb. Certainly it’s not a burden for doctors to avoid frightening parents with incomplete and inaccurate information.