We need to talk about IGM…

A couple of days ago, Alice Dreger and Ellen K. Feder jointly posted a brief article (Bad Vibrations) on the Bioethics Forum of the Hastings Center’s website.

The piece picked up on an earlier article, Nerve Sparing Ventral Clitoroplasty: Analysis of Clitoral Sensitivity and Viability – PDF here – published in 2007 by Jennifer Yang (a pediatric urologist), Diane Felsen (a pharmacologist) and Dix P. Poppas, M.D in The Journal of Urology.

Dreger and Feder’s piece focuses attention on Dr Poppas, a pediatric urologist at New York Presbyterian Hospital, Weill Medical College of Cornell University whose “special interest in genital reconstruction [and] surgical aspects of disorders of sexual development” has apparently led him to carry out a program of research on 51 girls aged between 4 months and 24 years old (mean age ± SD 4.6 ± 6.8 years) in which he performed nerve sparing ventral clitoroplasty, which included “followup testing of clitoral viability and sensation after clitoroplasty“.

The followup tests involved “Poppas stimulating the girls’ clitorises with vibrators while the girls, aged six and older, are conscious” are described in Dreger and Feder’s article as follows:

At annual visits after the surgery, while a parent watches, Poppas touches the daughter’s surgically shortened clitoris with a cotton-tip applicator and/or with a “vibratory device,” and the girl is asked to report to Poppas how strongly she feels him touching her clitoris. Using the vibrator, he also touches her on her inner thigh, her labia minora, and the introitus of her vagina, asking her to report, on a scale of 0 (no sensation) to 5 (maximum), how strongly she feels the touch. Yang, Felsen and Poppas also report a “capillary perfusion testing,” which means a physician or nurse pushes a finger nail on the girl’s clitoris to see if the blood goes away and comes back, a sign of healthy tissue.

Dreger and Feder’s article has received widespread coverage online and elsewhere, with a piece by Dan Savage at The Stranger (Female Genital Mutilation at Cornell University) in particular being linked widely. (Dreger has also written a further piece – Can You Hear Us Now? – at Psychology Today)

Whilst the followup procedures of Yang, Felsen and Poppas are undeniably abusive and intrusive, I can’t help feeling that the original enforced genital mutilation carried out on the 51 research subjects is quite likely illegal as none of the subjects’ health seems to have been at risk in any life-threatening way.

In 1996, President Bill Clinton signed into law Criminalization of Female Genital Mutilation Act, which made it a crime to circumcise, excise, or infibulate the whole or any part of the labia majora or labia minora or clitoris of another person who has not attained the age of 18 years unless the operation is “necessary to the health of the person on whom it is performed.” [Via]

On this basis alone, it’s hard to see how the actions of Yang, Felsen and Poppas could even be considered legal, let alone ethical. It’s also worth noting that their research seems to have been carried out some 10 years after the legislation was enacted and it is only now, another 4 years later, that the knowledge of this ‘research project’ has moved into the mainstream public domain.

All this, of course, assumes that the children concerned were selected for no other reason than that they were available to Yang, Felsen and Poppas – but having looked more closely at the original research document, I’m beginning to wonder if these are, in fact, intersex children. Consider: the report states that the subjects had enlarged clitorises, and that this anatomical variation “is often a prominent manifestation of virilizing congenital adrenal hyperplasia and other disorders of sexual development”.

Congenital adrenal hyperplasia (CAH) is an endocrine disorder in which the adrenal glands produce abnormally high levels of virilising hormones and as such is already known to the medical profession as an intersex variation – or “disorder of sexual development”, the preferred pathologising and stigmatising term which, although preferred by the medical profession (and which Dreger was – is? – a proponent of), is objected to by some intersex activists.

It seems increasingly likely to me that, not only are we talking about a research project on intersex children, but also that that fact is being suppressed in Dreger and Feder’s article, even though it seems clear from the original report that this is exactly the situation. Which – if I’m correct in my interpretation – makes me wonder why Dreger and Feder chose not to highlight it too, and instead of focusing only on the postoperative experimentation. For what it’s worth, Alice Dreger has previously been known for her controversial views on issues of concern to both the intersex community (see this piece at OII) and the trans community (see this piece at TS Roadmap) but I can’t think what reason she might have for wanting to erase the fact that these were intersex children.

Equally, I can think of no good reason why Ellen Feder would want to do that either; she was one of the co-authors of the recent letter of concern from bioethicists, which sought an end to the off-label administration of dexamethasone (a prescription medication) to pregnant women who may give birth to girls with Congenital Adrenal Hyperplasia (CAH).

Finally, I’d really like to know why Alice Dreger and Ellen Feder have waited until now to spotlight this research document which, as I pointed out above, was first published in 2007.

I have to say that I’m completely mystified why the writers of any article detailing such shocking treatment and human rights abuses against intersex children should feel it necessary to leave out the salient fact that the subjects of the research are intersex. But one thing is clear: if we, as a society, are going to condone the treatment of intersex people like worthless lab rats and then deliberately airbrush them out of high-profile news stories about the injustices they’ve suffered, then how are we ever going to be able to start making amends for the human rights abuses inflicted against them in the name of medical science?

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ETA, June 19:

Of these patients 46 (90%) were genetic females with congenital adrenal hyperplasia, 3 (6%) were 46 XY who had undergone sex reassignment surgeries and 2 (4%) were 46 XX disorder of sexual development.

That’s from the report itself – PDF here – and not the more widely publicised abstract – link here – even though the abstract also makes it clear that intersex people were subjects in this almost eugenicist experimentation.

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ETA update, June 19: I’ve been looking at some of the trackbacks this post has received from other blogs and have seen suggestions in a couple of those links that some of the people experimented on were/are trans. At first glance, this is the obvious conclusion to draw from this phrase in the Poppas report – “[…] 3 (6%) were 46 XY who had undergone sex reassignment surgeries […]” – but I believe that it may well be an erroneous conclusion.

I don’t deny that some intersex people are trans and I don’t deny that some trans people are intersex. And I’m well aware that for some transsexual people, SRS is sometimes (though not always) one of the treatments we undergo to ease our gender dissonance (where our brains were expecting a body with a genital configuration different from that with which we were born).

However, there is also an intersex variation known as Gonadal Dysgenesis, which may manifest in various ways, and a number of medical categories have been devised to cover those variations: Complete Gonadal Dysgenesis, Mixed Gonadal Dysgenesis and Swyer Syndrome.

From the (admittedly limited) research I’ve done, I’m firmly of the opinion that the 3 individuals concerned are more likely to have one of the gonadal dysgenesis variations, than they are to be transsexual. In the context of gonadal dysgenesis, the meaning of the term sex reassignment surgeries has far less to do with the procedures carried out – with informed consent – on some transsexual people, than it does to the enforced normalisation imposed on intersex people by means of non-consensual “corrective” surgeries.

As far as I’m concerned, this is an exclusively intersex issue, and any suggestion that some of the research subjects are transsexual – although understandable – is not only incorrect, but also risks recentering the discussion in an unhelpful and distracting way.

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ETA, June 23: From The Toronto Star:

Asked by the Star why it took nearly three years for anybody to pick up on Poppas’ testing techniques, Dreger said Monday that, “You have to kind of know the code you’re reading to understand what he’s describing.”

Orly? Well, how about this?

Enlargement of the clitoris is often a prominent manifestation of virilizing congenital adrenal hyperplasia… We present 51 consecutive cases of […] clitoroplasty performed by a single surgeon… Postoperative evaluation […] included […] examination and […] sensory testing and vibratory sensory testing.

[Via]

Hmm. That doesn’t seem too hard to understand to me, but as I said in my original post, it’s the other questions which I’d like to hear the answers to.

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Previous posts on this blog in the category Intersex:

• Indonesia: Trial continues of XXY man for being an XXY man (June 9, 2010)
• Five Myths that Hurt Intersex People (May 12, 2010)
• OII Position Statement on Genital Cutting (March 28, 2010)
• UK: National newspaper publishes unexpectedly reasonable report about intersex (March 21, 2010)
• KS Awareness Week, 14th – 20th March 2010 (March 14, 2010)
• IAAF still playing god with Caster Semenya’s life (March 12, 2010)
• ‘Sex Not Specified’ (March 9, 2010)
• Q: Caster Semenya, the real “Middlesex”? A: No. (February 27, 2010)
• Medical science: police the borders of identity first, reduce the risk of CAH second (February 20, 2010)
• From the IAAF to the IOC: another (not so) fine mess (February 17, 2010)
• Intersex youth in Gaza (December 21, 2009)
• Intersex Solidarity Day – November 8 (November 8, 2009)
• This week, I have mostly not been blogging about… (September 12, 2009)
• Athlete to be subjected to a “gender verification test” (August 20, 2009)
• Sugar and spice and all things neurobiological (March 31, 2009)
• OII receives a letter from Dr Zucker’s legal representatives (March 21, 2009)
• Intersex Solidarity Day – November 8 (November 2, 2008)
• Disorders of Sex Development (September 27, 2008)