By now, you’ve heard the story about Dix P. Poppas, a pediatric urologist at Cornell University who published research dealing with a new technique for cutting oversized clitorises off of baby girls—and who used repeated examinations with a vibrating device* to verify, as the girls grew, that their nether-region nerve endings still worked. Dan Savage brought the initial posting on the Hastings Center’s Bioethics Forum to broader public attention. Jezebel focused in on the part about the vibrating device. And Slate tried, and mostly failed, to find a contrarian “this isn’t as bad as it sounds” angle.
As I read up on the story, though, I realized that nobody was explaining what was really going on here. Not fully, anyway. See, Poppas wasn’t just pulling this idea out of his rear. And his patients weren’t just little girls with slightly larger-than-average clitorises. In fact, the children were born intersexed—genetically female, but with ambiguous genitalia caused by a hormone imbalance. For these girls—and other children born with a variety of intersex conditions—genital surgery in infancy is standard practice. It happens all over the United States every day. The only thing that makes Poppas different was his follow-up procedures (a whole problematic can of worms that the sources above cover very well.)
But just because Poppas was following standard practice doesn’t mean there’s nothing to question. Doctors recommend genital surgery for intersex babies on the assumption that it would be psychologically damaging to grow up with private parts that are so outside the norm—your parents wouldn’t be able to handle it and would reject you, you’d be tormented by peers, etc. But the thing is, there’s no evidence that this is true. We don’t know that intersex people who’ve had the surgery lead happier lives than those who haven’t. Nobody has ever systematically followed up with the patients to find out.
Here’s what we need to be asking questions about: Why are we performing purely aesthetic surgeries that come loaded with a lifetime of possible side-effects—from incontinence to inability to orgasm—when patients are too young to consent and there’s no evidence that the surgery offers them any benefits?
*NOT an actual dildo vibrator, as I understand it. Read the Slate piece for more detail.
You might think the idea that “people are freaked out by ambiguous genitalia and happier with normal” would just be common sense. But reality and common sense don’t always align. There’s been no research on outcomes for intersex adults, but there have been lots of intersex adults who’ve spoken up about being miserable with the results of childhood surgeries. Realistically, there are probably people who are happy with their surgeries, too. But, with the evidence we have, all we can say for sure is that there’s no guarantee surgery is the right way to go, psychologically, for each individual. Meanwhile, the standard practice is to not offer individual choice.
I’m going to go out on a limb and call that wrong. But this isn’t just oppressive to people who don’t fit a neat gender binary. It’s also not scientific medicine.
I love modern medicine. The skeptic movement has turned me into an advocate of evidence-based medicine—the simple idea that tradition, anecdote and common sense aren’t good enough reasons to ask a patient to spend money and risk side-effects on a treatment. If there’s no solid, scientific evidence, what you’re doing isn’t medicine. It’s woo-woo magic.
But I think people often forget that this doesn’t just put the smack down on things like homeopathy and chiropractic. Mainstream medical treatments have to be held to the same standard. And they don’t always measure up, either.
Case in point: My lower back. Since I was 21, I’ve been privileged to enjoy periodic bouts of horrible searing pain shooting around my hips and down my legs. Doctors tended to prescribe me muscle relaxers and tell me that, at some point, I’d probably have to have surgery. But about a year and a half ago, I got a new doctor, Jonathan Tallman. And he was different. Instead of relying on anecdote and common sense, Dr. Tallman looked at the research. He told me that studies didn’t really show evidence of success for muscle relaxants, or surgery, or chiropractic, or any number of expensive treatment options. In fact, he said, studies were often stopped because the control groups—who were just doing moderate, daily exercise—were the only ones who saw any reduction in back pain. “So, why don’t you try exercise,” he said. I haven’t had any back pain since.
That’s evidence-based medicine in action.
Dr. Poppas? That’s what happens when well-meaning doctors stop practicing medicine and start practicing woo-woo magic. Poppas wanted to introduce a surgical technique that would preserve as much nerve tissue as possible. That would normally be laudable. But what he should have been doing was studying whether the surgery was necessary at all.
Research and follow-up studies could end up showing that intersex children do get psychological benefits from growing up with “nomalized” genitals. I don’t know. Nobody does. But you can’t just assume a treatment is successful because you think it ought to be. Until there’s evidence, one way or the other, surgery on the genitals of intersex children shouldn’t be any more legitimate than trying to fight off malaria with a sugar pill.
Image courtesy Flickr user ida_und_bent, via cc