FGM at Cornell

Yes, really. Dr Dix Poppas has been operating on girls whose clitorises were judged to be “too large”. Then he’s been testing for the preservation of nerve functioning by stimulating them with vibrators. Dreger and Feder write:

But we are not writing today to again bring attention to the surgeries themselves. Rather, we are writing to express our shock and concern over the follow-up examination techniques described in the 2007 article by Yang, Felsen, and Poppas. Indeed, when a colleague first alerted us to these follow-up exams—which involve Poppas stimulating the girls’ clitorises with vibrators while the girls, aged six and older, are conscious—we were so stunned that we did not believe it until we looked up his publications ourselves.,,In the course of our inquiries, made in preparation for this publication, nearly all clinicians to whom we described Poppas’s “clitoral sensory testing and vibratory sensory testing” practices thought them so outrageous that they told us we must have the facts wrong. When we showed them the 2007 article, their disbelief ceased, but they then seemed to become as agitated as we were.

If you’d like to contact Cornell, you can do so here. Or you can go straight for their Dean of Medicine, dean@med.cornell.edu.

If you want a shorter discussion than the original article by Dreger and Feder, you can read Dan Savage’s here.

(Thanks, Laura.)

30 thoughts on “FGM at Cornell

  1. Argh!! I don’t know if I should throw up or cry (probably both). On top of it, what the F*** is going on in the parents’ minds to consent to the mutilation? Is it, as the Savage discussion suggests, that they are afraid their daughters will turn out lesbians? As the mother of two girls myself, I find this utterly, utterly incomprehensible, repulsive really.

    It might be a matter of personal taste (ironic emoticon), but I prefer a million times a lesbian daughter with an intact clit than one who’s not lesbian but who can no longer fully enjoy the anatomy she was born with (in fact, I’m completely indifferent as to what my daughters’ sexual option will be, as long as they are happy and having a good time when they grow up).

    (Sorry for the outburst, nothing very philosophical here…)

  2. i hope someone has *rung the police* about this. this seems so clearly sexually abusive. how on earth is this allowed to go on??

  3. And again, to think that these follow-up examinations take place with the parents’ consent :((( These people do NOT have a clue. I hope it’s a matter of ignorance most of all, SOMEONE should explain to them how damaging the whole thing is.

  4. I just emailed this to the dean:

    Dear Dean Gotto,

    I am writing to express my serious concern with the methods of Cornell’s Dix P. Poppas, as reported in Yang, Felsen and Poppas (2007), “Nerve Sparing Ventral Clitoroplasty: Analysis of Clitoral Sensitivity and Viability,” Journal of Urology 178.4 supplement, 1598-1601. The article summarizes results of 51 consecutive cases of nerve sparing ventral clitoroplasty performed by a Dr. Poppas on patients presenting with clitoral megaly, and of Dr. Poppas’s post-surgical clitoral sensory testing and vibratory sensory testing on some of these patients.

    The surgery itself is objectionable. Scholars of DSD (Disorders of Sexual Development) have known for years that there is no empirical evidence that clitoroplasty is necessary to ensure the well-being (including the psychological well-being) of patients with clitoral megaly. And there is abundant evidence from those who underwent such surgeries as children that such surgeries should be avoided.

    However, what is of particular concern is Dr. Poppas’s practice of performing clitoral sensory testing and vibratory sensory testing on post-op clitoroplasty patients over the age of five. According to Alice Dreger and Ellen Feder, who yesterday reported on Dr. Poppas’s practices in Bioethics Forum (http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4730&blogid=140), Dr. Poppas does not have IRB approval for his practice of stimulating young girls’ clitorises with vibrators to test for clitoral sensitivity. Indeed, one could hardly imagine such approval being granted. Not only is such testing “developmentally inappropriate” according to Toronto Hospital for Sick Children psychologist Ken Zucker, it is also empirically suspect without results from an appropriate comparison class. Most seriously, it is, by almost any standard, child sexual abuse.

    I urge Cornell to suspend Dr. Poppas’s research and clinical practice until a full investigation into his conduct can be carried out.


    Dr. Shannon Dea

  5. I only now stumbled across this blog. This is outrageous. Parents may have some custodial rights over their children through which they may act in their childrens’ best interest, but children also have an (arguably stronger) right over their own bodily integrity.

    Try matching those rights up with this practice. Doesn’t work.

    Thanks for sharing.

  6. shannon, great letter. i think you ought to write to the mainstream press, personally. it seems like that would be a swift way to have this shut down. (i would do it myself, but i have no training in medicine or anything similar. you sound like you know what you’re talking about.)

  7. Writing to the IRB would also be a good idea. Following some of the other links, it looks like he only got approval for a retrospective chart review – not for the physical exams.

  8. Ditto on extendedlp’s comment. Shannon, that letter would be a great letter to the editor to the Ithaca local papers. The IRB exists precisely to prevent such almost certainly abusive experiments and “treatments”!

  9. […] Melissa has opened a discussion about it: Discussion Thread: Cornell University and FGC, and Melhoukia has been writing about it: This makes me sick: There are not enough content warnings in the world for what you are about to read. I first heard about the article through Feminist Philosophers: FGM at Cornell. […]

  10. i sent a link to the bioethics forum article to intact america (an anti-circumcision pressure group) in the hopes they’ll make a little extra noise about it.

  11. My attention was caught by the opening sentence of the abstract of Poppas: “Enlargement of the clitoris is often a prominent manifestation of virilizing congenital adrenal hyperplasia and other disorders of sexual development.”

    I’m not trying for one second to defend what is being done; I did, however, feel that it’s the sort of situation that could make a parent crazy, and I think it might be appropriate to see the parents as NOT making a cosmetic decision.

    People with the condition mentioned appear to have a systematic condition affecting growth and secondary sexual characteristics; if they are “salt-wasters,” they may die in very early infancy. Though I have no experience in the area, the images I saw on the web all showed fused labia (i.e., as far as one can tell, no minor labia) and a penis-like projection.

    So the parents are dealing with what we count, I think, as an intersexed child who has already been pathologized. In light of this, I am perplexed by the decision to represent the parents as going for surgery because the physician has judged the clitoris to be too large.

    I’ve always supported the recommendation that one leave the gentalia of an intersexed child alone until the child can decide. But if what I’ve been reading is right, it looks as though there are a number of other decisions about treatment for various results of the ‘disorder’. If you want the standard growth patterns that the child’s siiblings will have, and the standard secondary sex characteristics that would usually accompany the child’s internal organs, then some medical treatment starts to look required.

  12. Sorry if I have misunderstood, but wouldn’t this kind of genital surgery be treating the symptoms rather than the cause, i.e., adrenal hyperplasia?

  13. jj, thanks for bringing some balance to the story. It is easy to get carried away with such topics. I guess the Dan Savage piece is a bit misleading in that it construes parents’ concerns as somewhat frivolous; presumably, these ARE cases where at least some medical concern is warranted. But then, one wonders if they are being properly informed of the possibilities and of the implications of Poppas’ approach. And of course, Lani’s point is very relevant too; presumably, other courses of action would have to be taken too (presumably they are).

  14. yes, i want to ask lani’s question, too. how would cutting off some of the clitoris keep them from being salt wasters?

    it seems like the fact that this condition can often be part of an array of more worrying conditions should only *add* to the worry that parents are being scare-mongered into agreeing a surgery which might not be warranted on medical grounds, and might raise issues surrounding consent. no? (and again, the vibrator testing seems abusive and unnecessary (from the point of view of the patient’s health) no matter why the surgery is being done, don’t you think?)

  15. Thanks for pointing out the complications of the situation– I have removed the phrase “perfectly healthy” in my post. However, my impression from is that there is no medical purpose to the clitoris reduction, and that similar surgeries have a history of producing serious and lasting damage. This is one reason why intersex people have been pushing for doctors to stop performing such surgeries. Another is that it perpetuates the view that there is something wrong with having genitals that are different from the norm.

  16. Thanks, Jender. I wasn’t really meaning to refer to what you said, but rather to its source. Some of the people writing have some expertise in this area. Perhaps we should assume that some of the cases are very mild.

    I did want to speak just about the parents. I do think that it’s important for intersexed people to have a dominant voice in this discourse, and the idea of not blaming the parents – at least so much – doesn’t count against that, I hope.

    I’m also concerned that the way the message has been presented – not here but in the original articles – the medical authorities are not going to look very sympathetically at the protests, which would certainly be a shame.

  17. Didn’t anyone notice that there was something unethical going on when evaluating the article for publication? It seems to me that there are many failures of (bio-) ethics involved here, beyond the most disgusting failure of the actual procedures and “tests.” From the abstract: “Patients older than 5 years were evaluated for clitoral sensory testing and vibratory sensory testing.” What did they think “vibratory sensory testing” means?!? As Shannon put it: That’s child sexual abuse! And that gets published in a peer-reviewed journal?!?

  18. Advocates for Informed Choice is a non-profit organization advocating for the legal and human rights of children with intersex conditions or differences of sex develoment, like the ones in this story. We work in collaboration with bioethicists, doctors, parents, affected adults, and many others. If you are interested in taking action to help protect these children, and to be sure that possible human rights violations are investigated, please join our Facebook page at http://ow.ly/20wTY or sign up for our Twitter feed at http://twitter.com/aiclegal.

  19. thanks for the link, alcintern. i think there are a lot of readers who will be interested in what your organisation is doing.

    rachel: indeed! a friend of mine tried to follow a link to the article the other day and got an error page, and for a moment i thought maybe the journal editors had realised they’d made a mistake in publishing it, and taken it down from the web. but it’s back now, so i guess it was just momentarily not working. but yeah, wtf were they thinking publishing it?

  20. Here is the contact information for the editor-in-chief of the Journal of Urology William D. Steers MD. I have emailed him to urge him “as the current editor-in-chief of this journal to develop and enforce ethical guidelines that would not only prevent publication of such articles but would also report ‘research’ such as that conducted for the article to the appropriate authorities.”

  21. O dear. I couldn’t access the J of Neurology article being discussed so I asked my library to order it; it has just arrived. I wondered if there was any way the testing for sensation could be less bad than it sounds. I think I thought the idea was testing to see if the child had any sexual reactions. Now I’m less sure, though that might not have been part of others’ picture.

    Here are some issues/claims; please notice that none of this is an argument for the procedure itself. It is more coming from my attempt to understand where the wrong is really located.

    The vibrating device is apparently a standard one used in tests of neuropathy; among these are tests for sensation in the feet. The idea apparently is that the tester increases the vibrations until awareness of the device is registered. Obviously, you are just testing for the presence of sensation and not for, e.g., the sensitivity to variations in the texture of the floor or anything very subtle. It’s more or less on or off – the threshhold for feeling is at a certain point – and quite quick.

    Is it possible that something that shows the presence of sensation in a normally sexually reactive area nonetheless does not cause sexual feeling? I myself would count most of a gyno exam as like that.

    So I’m not going to judge this all, but I’m now wondering whether the test for reaction to stimuli is very related to sexual abuse.

  22. someone (the pair who wrote the original article criticising poppas, maybe?) pointed out there’s no medical grounds for doing these tests: it’s not as if he can fix it if he finds they have no sensation or reduced sensation. so, from the standpoint of the medical care of the girls (rather than research–and recall, he has no IRB approval for researching in this way) it’s totally unnecessary. touching little girls private parts unnecessarily…doesn’t seem like it can fail to be abuse. does it?

  23. elp, I really, really don’t want to get to the point of defending the procedure.

    I don’t know if all non-therapeutic touching of small children’s genitals is abusive. There are other medical interventions on infants genitals or, more generally, private parts. Is it always impermissible to collect data about their effects if something touches private parts?

    If I had a male child with an incomplete and disfunctional urethra and had to choose between different kinds of reconstructive surgery, I suspect I’d wish the outcomes on feeling retention were known, if getting there didn’t involve sexually arousing a child.

  24. it seems really really clear to me. …but i can’t quite get at a reasoned explanation of why it’s so (apparently) clear. hmm…

  25. It’s very difficult and I’m not sure what to think.

    I suspect my intuitions are influenced by the fact that I wish the doctors have done a bit more probing and pushing with my son. His pediatrician closed down certain questions that I probably should have pursued (“You leave your son alone…”) and seemed to have missed a very important genital problem. Not that this was anything like as fundamental as the cases at Cornell.

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