Friday, 18 June 2010

Perverted Paediatrics?

A decade ago, for reasons that have never been satisfactorily explained, a Wales-based paediatrician came home to find that someone had sprayed the word "paedo" on her front door. At the time, the country was caught up in one of its periodic moral panics about child abuse, encouraged by a name-and-shame campaign in the News of the World. Since no-one was ever arrested, it cannot be known whether (as was widely assumed) the defacing of Dr Yvette Cloete's house was the result of some idiot's inability to tell the difference between a child-doctor and a child-abuser. Nevertheless, the incident soon came to be seen as emblematic of a spreading witch-hunt mentality. Every time paedo-panic reappears, the story is retold, not always accurately. Many versions have a howling mob turning up at the paediatrician's door to shout abuse or even hurling stones, and the unfortunate doctor left in fear of her, or his, life.

Might we, ten years later, be seeing this urban myth coming to life, fuelled this time not by illiteracy but by misinterpretation of a real, if controversial, medical procedure, and with the howling mob spontaneously forming itself among the educated, young and liberal denizens of blogs and facebook groups?

Yesterday, on Twitter, I came across claims that a leading American doctor had been sexually stimulating the genitals of small girls, under the guise of medical research, after first performing invasive and unnecessary surgical procedures to reduce the size of their clitoris. Like most who read it (initially in this version) I was horrified. It sounded - and still does - scarcely credible. So it's not surprising that the reaction has been extreme. The doctor and the institution that employs him have been bombarded with angry emails. A facebook group set up to "End Female Genital Mutilation at Cornell University" now has around 1500 members. Elsewhere I've seen calls for the doctor to be struck off, locked up, even castrated. Many of the comments are plainly libellous. Someone on Jezebel described him as "nothing more than a child molester practicing under the guise of doctor." To others, he was "a sick fuckazoid", "a QUACK", "that perv". Melissa McEwan of Shakespeare's sister, only marginally more restrained, described his work as a "human rights violation".

Is any of this justified?

Dr Dix Poppas is by all accounts (and despite a somewhat unfortunate name) a surgeon with an exemplary reputation, Professor of Pediatric Urology and of Plastic and Reconstructive Surgery at Weill Medical College - attached to New York's prestigious Cornell University - as well as being head of the Institute for Pediatric Urology at the Komansky Center for Children's Health. He is the winner of numerous awards and professional distinctions and has featured in lists of America's top doctors. He also has an impressive research pedigree, with 88 academic papers to his name, and is a pioneer of minimally-invasive surgical techniques. I've tracked down patient reviews offering high praise for his manner as well as for his expertise.

Among his specialisms, however, is the treatment of intersex conditions by surgery, for example reducing the "abnormal" enlarged clitoris in girls born with genetic or hormonal conditions. While it has long been regular medical practice to resolve the ambiguities sometimes thrown up by nature, the field has become increasingly contested in recent years. Intersex activists accuse doctors of interfering with nature, of making arbitrary judgements based on aesthetics or to fit cultural norms, of calling it wrong (in some cases, surgically-corrected "girls" grow up to identify as male, or vice versa) and of indulging in practices equivalent to the genital mutilation widely condemned when performed for religious or tribal reasons. Supporters of these procedures respond by pointing out that the stigma of abnormality can cause deep psychological scars, and that every child has a right to be normal.

It's a fraught area, but Professor Poppas is unlikely to have anticipated the storm that has broken over his head when an intersex campaigner and professor of bioethics, Dr Alice Dreger, unearthed a research paper Poppas has co-authored in 2007 (pdf). In it, Poppas described how using various techniques, including a device characterised by Dreger as a "vibrator", to ascertain the success of his "nerve-sparing" surgery on patients as young as six. Basically, he was trying to find out if what was left of the child's clitoris after he had finished chopping it up retained sufficient sensitivity to enable it, in due time, to do its job. The experiments - if that is what they were - were carried out in the presence of the children's parents. Nevertheless, Dreger and her colleague Ellen Feder were concerned both at the ethics of the procedure and of its likely long-term psychological impact. They write:

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. At an international conference two weeks ago, when Dreger told Ken Zucker, a psychologist at the Hospital for Sick Children in Toronto and member of the clinical establishment, about this, Zucker said that we could quote him as saying this: "Applying a vibrator to a six-year-old girl’s surgically feminized clitoris is developmentally inappropriate." We couldn’t find a clinician who disagreed with Zucker.

Dreger and Feder compare Poppas' post-operative tests to the notorious Tuskegee Syphilis Project, in which black patients were deprived of life-saving treatment so that doctors could watch them die. Here, they write, was another example of "how the dehumanizing, scientized language of modern medicine 'can obscure and de-emphasize any ethical, non-scientific perspective'." In a follow-up post, Dreger describes one of his tests - using a cotton-bud - as "creepy". She doesn't explicitly accuse him of child-abuse, or of being a pervert. Then again, she doesn't need to. The implication is enough.

So far, there has been no response either from Cornell university or from Dix Poppas himself*. The latter would appear to be in hiding. Now, clearly, there are are important questions raised both by the operations and by Poppas' follow-up tests. I can't help suspecting, though, that the facts have been somewhat distorted even in Dreger's original account of them.

For one thing, she is somewhat vague about the conditions Poppas was treating, leaving the casual reader to infer that the operations were cosmetic, based on little more than his subjective opinion that some girls' genitals were "too big". On the question of whether or not the tests required ethical approval, for example, there seems to be some confusion. The 2007 paper received approval from the appropriate review board - but, as Dreger points out, the 2007 study was a statistical analysis of Poppas' results stretching over a number of years. He had had no ethical approval for "experimenting" on the patients as part of a study into the effectiveness of his surgical technique. Dreger writes:

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.

Perhaps. But was Poppas was engaged in an experiment at all? What he was doing was ascertaining the success of each particular procedure and writing up the results. "It isn’t clear to us" write Dreger and Feder, "how this kind of genital touching post-operatively is in individual patients' best interests. If the testing shows a girl has lost sensation through the surgery, her lost clitoral tissue cannot be put back." Indeed not. But - leaving aside the question of genital reconstruction surgery, which is a much larger topic - the tests would have been beneficial for Poppas' professional development, and thus for all his future patients.

His main aim, plainly, was to see if his technique really did preserve nerve-endings that traditional procedures destroyed. This was in no sense a scientific trial - if it had been, the follow-up tests would have been carried out by a different doctor to discount bias. There would also have been control groups - one of girls who had been operated on without Poppas' revolutionary "nerve-sparing", and another of girls who had not been operated on at all. I cannot imagine ethical approval being given to any such project. The 2007 paper acknowledges the limitations of the study. It does, indeed, envisage comparison with "an age matched normal cohort" after the patients have achieved sexual maturity.

None of this means that Poppas' precise technique was socially appropriate, especially in today's heightened and sexually self-conscious climate. Even the dry, technical language of the 2007 paper is more than a little disturbing:

Patients older than 5 years were considered candidates for CST. CST was performed using a cotton tip applicator. Using a scale of 0—no sensation to 5—maximum sensation, the patient was asked to report the degree of sensation at various points of the inner thigh and genitalia (labia majora, labia minora, vaginal introitus and clitoris). Inner thigh stimulation was set at level 3 for each patient and used as a baseline to compare other areas tested. In addition, these patients also had vibratory sensory testing performed using a biothesiometer designed to quantify the ability of patients to detect vibratory stimuli... The device generates a vibratory stimulus of varying amplitudes that can be gradually increased until the sensation is perceived by patients.

Yes. I can see why this has set alarm bells ringing. But without being present in the consultation room one can't really judge it. At the very least it's a big assumption that the procedure would have been perceived as in any sense sexual by pre-pubescent patients, or that it is likely to have a long-term impact on their psychological development. I think we may be dealing with the all-too-common phenomenon in our society of sexualisation - imposing adult concepts of sex onto children, reading sexual motivations where they do not exist, imagining that anything that could be about sex, is about sex. I wouldn't want to prejudge any inquiry, but it seems to me unlikely that there was anything improper about the atmosphere in Dr Poppas' consulting room. There certainly isn't any evidence that there was.

There remains the interesting question of Alice Dreger's involvement in the story. There was a Tweet yesterday from Dr Petra Boynton that "the last time Dreger got involved in something like this (on trans issues) it got very messy". A quick Google reveals the existence of websites dedicated to discrediting her, mainly run by intersex activists who object to her previous championing of the term "disorders of sex development" to describe intersex conditions. Another accuses her of being "part of a long history of transsexual imperialists, cissexual persons who have appropriated trans identity to control the flow of discourses that determine our lives." It gets a bit complicated. Suffice it to say she seems to be someone of strong opinions who is always up for a fight.

Her objection to the surgical correction of ambiguous genitalia is deeply felt. It seems to me that she would not be above misconstruing Dr Poppas' patient examinations in order to discredit his and others' surgical work. She writes: "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." By contrast, many members of the public may sympathise with the view that Poppas' surgery is concerned with correcting congenital abnormalities and enabling children to fit into a society that still has a binary view of gender. The case for intersex identity and rights has not yet entered mainstream discourse. But anyone can get angry about a doctor apparently touching up little girls.

Paedophile. Paediatrician. What's the difference?

*UPDATE: a response from Cornell University posted on the facebook group:

While it is too early to provide a meaningful response to your comments, please be assured that we take your concerns seriously and are looking into the matter thoroughly.
Cornell University and its Weill Cornell Medical College are committed to providing the highest quality education, research and clinical care.