In a brief article entitled "Bad Vibrations" just posted at the Hastings Center's Bioethics Forum, my colleague Ellen Feder and I express our shock over the follow-up techniques being used by pediatric urologist Dix Poppas at Weill Medical College of Cornell University on girls whose clitorises Poppas has cut down in size.
There's no point in my repeating here what we say at Bioethics Forum. Instead, I want to use this space to answer some questions I'm already getting from people about this scene.
Poppas says he's using a "nerve-sparing" technique. How confident are we this will make a difference in terms of saving these girls from the sexual dysfunction (and pain) that many in previous generations have suffered following childhood surgeries designed to make their clits look more petite? Not that confident, frankly.
We're glad Poppas cares about function. But if he really cared about maximizing these girls' function, he would not be doing surgery on their healthy clitorises. To quote from a follow-up study published in the Lancet, "Although surgery has advanced in many ways, this is not a valid reason for complacency. In this study surgery was done 8-40 years ago, and most individuals had undergone clitorectomy [complete removal of the visible clitoris]. Of the three sexually active participants who had undergone the newer technique of nerve-sparing clitoral reduction, however, two had the worse possible score for orgasm difficulties."
Moreover, "nerve-sparing" techniques from other surgeries also make us pessimistic. "Nerve-sparing" in prostate surgeries has not turned out to dramatically improve rates of continence and sexual potency following prostatectomy. And you know what? To shorten these clitorises, Poppas is saving the glans (tip) but cutting out parts of the shaft. Bo Laurent has pointed out that Masters and Johnsons showed that many women masturbate by rubbing the shafts of their clitorises. (Think about it: the clit is the homologue of the penis. How do men masturbate?) Many women seem to find their clitoral glans almost too sensitive. Poppas's patients are losing the option of touching parts of their shafts, because he's throwing them out (after the cut-away parts have been sent to pathology to see if he accidentally took out a nerve).
One time I asked a surgeon who does these surgeries if he had any idea how women actually reach orgasm. What did he actually know, scientifically, about the functional physiology of the adult clitoris? He looked at me blankly, and then said, "But we're working on children." As if they were never going to grow up.
Why are they doing that fingernail pressure test? To show the clitoris is still fully alive after surgery. In the past, some girls' clitorises necrosed (died) after these clitoroplasties. Remember: these are elective surgeries done because a clitoris gets labeled "too big" by an adult looking at the child's genitals.
What does the vibrator consist of? These are not like big phallic dildos. They're more like little buzzers, more like the kind of tiny little travel vibrator you can slip past the TSA without major embarrassment on the security line. ("Whose vibrator is this?") But they're still vibrators, and he's still purposely stimulating these girls' clitorises to prove his surgical technique is good.
By the way, when Janet Green asked Poppas about these vibrators at a meeting, he cut her off and insisted she use the term "medical vibratory device." This led to my joking to my mate, "What's the difference between the vibrator in my bedside table and a medical vibratory device? A hospital billing code." I guess size also matters to some. (To me, it's not the size, it's the settings.)
What's with the cotton-tip applicator (Q-tip) tests? Yeah, what is up with those? That kind of test is so ridiculously subjective that it is rather absurd to use it as "scientific" proof of anything. You can't guarantee the Q-tip user is applying the same pressure every time. On top of that, many of us feel like it's actually a bit more creepy than the vibrator. I just would not want my daughter having the memory of having her thigh, her vagina, her labia minora, and her clitoris stroked with a Q-tip while she's asked if she can feel the doctor touching her. ("Can you feel me now?") And as a parent, I can't imagine ever looking at a Q-tip the same way again.
So why the heck do Poppas and other surgeons do these surgeries? They believe it is necessary to ensure "normal" sexual development. If you look historically, there's a whole lotta heterosexism and homophobia behind this clinical model. I traced that in my first book, Hermaphrodites and the Medical Invention of Sex, and in my very first article for the Hastings Center. I'm joined by lots of other scholars showing the same.
Many of us happen to think "normal" sexual development is actually likely to be thwarted by having parts of your genitals taken away without your consent, and thwarted by follow-up exams like the ones we are describing. Ellen and I have gotten to know hundreds of adults born with sex anomalies who went through these medical scenes growing up. Many have told us that the genital displays involved in the follow-up exams were more traumatic than any other part of the experience. Indeed, when I once asked a group of women with androgen insensitivity syndrome what they wanted me to work on primarily in my advocacy work, they said stopping the exams, particularly those in which med students, residents, and fellows parade through to check out the surgeon's handiwork.
When I asked Ellen what she wanted me to be sure to cover in this blog, she answered, "I think the really critical thing is the psychological impact, and how much we don't know about that. We just don't know what parents are and aren't told, and it looks like in so many of these cases, the parents have no access to mental health professionals who can calmly and compassionately spend the weeks and months it takes to help parents think about the long-term issues and the evidence for and against various options."
Ellen (who, like me, is a mother) also added that parents tend to do whatever pediatricians tell them is necessary, because they're scared to "withhold" a medical treatment offered for their children. The parents in Poppas's clinic may well not know their children are essentially being experimented upon.
How come the article says Poppas had IRB (ethics oversight) approval and we suggest he probably didn't? Because what he has approval for is retrospective chart review, a harmless little look back at what he recorded in the charts as having happened to his patients. What he didn't do was to get approval in advance for the "clitoral sensory testing" that he was writing down in the chart and then used to produce the systematic and generalized conclusions about his technique. This may sound like a technicality. It isn't. If he had sought IRB approval for the "sensory testing," the ethics staff might have sat up and asked him what the heck he thought he was doing to these girls, and they would have tried to make sure the parents were informed about the unknowns and risks, and the girls could have refused to participate.
What's going to be Poppas's and his colleagues' response to our writing on this? I anticipate the usual, where they reassure the press that this is medical so it is all OK. They'll say that these girls have a tragic deformity and that parents have the right to choose (but they won't mention that that choice is not being fully informed by the actual evidence). They'll paint us as crazy radicals, and won't mention that, in fact, the medical profession has been moving towards our position about holding off on clitoral surgeries.
Finally, do we really think this is like what happened in the Tuskegee Syphilis Study? Yup. A population gets marked as being not normal sexually, and then ends up as research fodder with sub-standard ethics oversight, without anyone even telling them they're research fodder. The docs publish years of follow-up studies in medical journals, and their colleagues, including the medical journal editors, don't stop and say, "Wait, what now? What are you doing?" And the only way these girls are going to get protected is if the press finally gets involved.
You can expect, as with Tuskegee, that the clinician-researchers are never going to understand that they did anything wrong. They think of themselves as good people (most clinicians are), and they forget that good intentions are not enough, especially when careerism causes tunnel vision.
There's a reason Janet Green calls this scene "Tuskegee North." If you're wondering why I sound kind of grumpy in this post, it's because, as an historian, I feel like we should, you know, learn from the past. Instead, we've got Dr. Poppas asking these post-operative little girls, "Can you hear me now?" as he stimulates their now socially "appropriate" clitorises. Well, I'm asking the higher-ups at Cornell's medical school, "Can you hear us now?"
My online writings on sex are now collected at Sex Research Honeypot.