In a piece published today in Slate, Hanna Rosin writes about the outcry following what Ellen Feder and I published last week in Bioethics Forum. We covered the "follow-up" exams done by Dr. Dix Poppas of Weill Medical School of Cornell and New York Presbyterian Hospital on little girls whose clitorises he has shortened simply because they are "too big."
Ellen and I are today working on a related (and equally astonishing) story, as well as filing formal concerns with the Office of Human Research Protections about Dr. Poppas's practices, so I don't have a lot of time, but here's a quick response. (We also point you to Dan Savage's response, which covers a lot of what we would say.)
Rosin notes that we liken Poppas's work to the Tuskegee Syphilis Study. She doesn't mention how we analogized it, namely by noting that when you put these practices into medicalized language, they sound pretty innocuous. When you translate them into English, the top of your head blows off.
Ironically, Rosin did just that in her Slate piece: translated Poppas's practices back to medical language, suggesting to her readers that maybe it's really not so bad. Really? Touching a girl's clit with Q-tips and vibratory devices, after you've cut off a big chunk because you think it looks too big to make others comfortable, and asking her if she can feel you touching her, and doing it yearly so you then have data to shop your skills to other parents? Um, really?
A friend who is doctor once came up with a term for a surgeon like Poppas with whom I was trying to communicate. My friend diagnosed the surgeon with "chronic rectal cranial impaction syndrome." Sounds scary, right? Well, in English it translates to regularly having your head up your ass. Medical language can be very misleading. That's why we think it's worth talking about Poppas's work in plain English.
What I really don't get is why Rosin talks about the horrors of the John Money show and doesn't get that Poppas is the sequel. He is "The Jeffersons" to Money's "All in the Family," complete with the "moving on up" theme playing in the background, as he uses these girls to make money and fame. This is a guy who, I kid you not, starts his medical presentations with a picture of his yacht, named Prometheus. (There's a good reason Ellen and I are trying like hell to page Zeus.)
The problem with writers like Rosin is that they come to a sexy topic like this, interject a half-formed set of observations, and walk away. In this case, she works to defuse public anger about Poppas's practices by saying things like "these girls have penises" (when, by the way, they don't). She gets a publication, presumably some pay, and we get to try again to make people realize that the John Money show may look like it went off the air when Johns Hopkins shut him down. Instead, the successors moved to Manhattan.
By the way, I have criticized bioethicists for pulling the same business of pointing, staring, publishing, and moving on. And they seem to have an even greater responsibility to get up and do something. I'm glad to say a bunch have lately. A few months ago, thirty of our colleagues joined Ellen Feder and me in complaining to the feds about an equally disturbing research program at Cornell, on the mothers of these girls. Six hundred or more mothers were given a drug during pregnancy without, apparently, being told they were in a big experiment. The goal was to prevent the ambiguous genitalia, because the docs recognized that Poppas's surgeries are not at all a sure thing. (Time magazine just covered the work I've done with Ellen Feder on that.)
Don't get me wrong. We are glad for Rosin's article. She's helping to bring attention to what's going on with these children and their supposed rights. The problem is that Rosin takes the most hysterical (largely anonymous) comments on the internet and seems to takes those as reason to tell people not to worry their pretty little heads.
We want people to worry their pretty little heads. It appears that Poppas was doing research on these girls without the ethics boards protections they are due. (He got "retrospective chart review" but not permission in advance, as he should have. Click here for an explanation.) Moreover, Rosin misses the most critical point: There is effectively no evidence that these surgeries are necessary, safe, or effective. Poppas is doing his "clitoral sensory testing" to try to prove they are safe, but he has no evidence they are safe, nor that they are necessary or effective in terms of improving a girl's health and well-being.
To paraphrase the abortion rights movement, if big clitorises bother Rosin, she doesn't have to have one. We're just asking she not get in the way of the ones we're trying to protect.
P.S. Want to help? See this.