Human Bodies http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4730&blogid=140
Alice Dreger and Ellen K. Feder, 06/16/2010
In “The Rhetoric of Dehumanization: An Analysis of Medical Reports of the Tuskegee Syphilis Project,” Martha Solomon brilliantly demonstrates how the project’s researchers hid their work in plain sight. Specifically, Solomon used the published reports of the Tuskegee syphilis study – which involved medical professionals actively withholding medicines from black men with syphilis for four decades – to show how the dehumanizing, scientized language of modern medicine “can obscure and deemphasize any ethical, non-scientific perspective.”
Solomon’s insights come to mind as we read the 2007 Journal of Urology paper, “Nerve Sparing Ventral Clitoroplasty: Analysis of Clitoral Sensitivity and Viability” by Jennifer Yang, Diane Felsen, and Dix P. Poppas. Writing in the typically dry, quantifying language of modern medicine, the authors report why they believe Poppas, a pediatric urologist at New York Presbyterian Hospital, Weill Medical College of Cornell University, has left a group of girls still able to have sexual sensation after he has removed parts of the girls’ clitorises. With parental consent, these girls’ clitorises have been cut down in size after the physician deemed these clitorises too big.
For over a decade, many people (including us) have criticized this surgical practice. Critics in medicine, bioethics, and patient advocacy have questioned the surgery’s necessity, safety, and efficacy. We still know of no evidence that a large clitoris increases psychological risk (so is the surgery even necessary?), and we do know of substantial anecdotal evidence that it does not increase risk. Importantly, there also seems to be evidence that clitoroplasties performed in infancy do increase risk – of harm to physical and sexual functioning, as well as psychosocial harm.
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.
Here more specifically is, apparently, what is happening: 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. Poppas has indicated in this article and elsewhere that ideally he seeks to conduct annual exams with these girls. He intends to chart the development of their sexual sensation over time.
Yang, a pediatric urologist, and Felsen, a pharmacologist, reported in e-mail messages to Feder that they did not participate in the follow-up “clitoral sensory testing” described in the article, but were concerned only with the analysis of the data collected during the post-operative evaluations. Yang indicated that all testing was conducted by Poppas and his nurse practitioner. Poppas told Feder by email that a family member is in the room when the touching takes place.
Although we have tried, we have been unable to locate any other pediatric urologist who uses these techniques. Indeed, we doubt many would, because we think most would – as we do – find this technique to be impossible to justify as being in these girls’ best interests. We understand that these tests might produce generalized knowledge that shows whether Poppas’s techniques are better than some other surgeons’, but it isn’t clear to us 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. However, the tests would seem to expose the girls to significant risk of psychological harm.
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.
Yang, Felsen, and Poppas describe the girls “sensory tested” as being older than five. They are, therefore, old enough to remember being asked to lie back, be touched with the vibrator, and report on whether they can still feel sensation. They may also be able to remember their emotions and the physical sensations they experienced. Their parents’ participation may also figure in these memories. We think therefore that most reasonable people will agree with Zucker that Poppas’s techniques are “developmentally inappropriate.”
What is Poppas thinking? So far as we can tell, from published articles, presentations to parents, and his communications with Feder, he thinks he is responding to critics of genital surgery, like us, and thus reassuring parents that everything is going to be fine. Notably, though, there is a lack of control data for most of the patients described, meaning that we don’t know what sensation these girls might have had without the surgeries, nor do we know what a “normal” level of sensation is at these ages. (We can’t imagine any sane parent giving up his or her daughter to be the control.) We also don’t know that what the surgically altered girls feel in childhood will map onto their adult sexual lives. And we don’t know how Poppas’s tests are going to affect their psychosocial development.
And what about institutional ethics oversight in this case? Yang, Felsen, and Poppas report IRB approval for retrospective chart review, but apparently have no IRB approval for the post-op “sensory testing.” We asked for a read on this from Anne Tamar-Mattis, the attorney who runs Advocates for Informed Choice, who has joined with us in formally expressing concerns about another medical procedure aimed at preventing the prenatal formation of ambiguous genitalia (and maybe also preventing the development of tomboyism, aggressiveness, and lesbianism in girls). Tamar-Mattis replied:
“If Dr. Poppas is using medical vibratory devices on girls' genitals in order to gather data for his published studies (for example, to show others that his surgeries preserve function), rather than solely for the girls' treatment, then he is conducting research. Legal and ethical standards require oversight by an institutional review board (IRB) when doctors are conducting medical tests for research purposes, in order to protect the rights of human subjects. If an IRB approved the use of ‘vibratory devices’ on young girls, I would want to know how they justified exposing those girls to the risk of psychological harm. I would also want to know if the girls and their parents knew they could refuse to participate, and if the parents understood about the psychological risks involved in these tests.”
Tamar-Mattis added that she is “also concerned about whether parents who take their daughters with CAH (congenital adrenal hyperplasia) to Cornell for genital surgery are being given full information about the risks and unknowns of these surgeries.” Indeed, the Web site for the Division of Pediatric Urology at Weill Cornell Medical College, where Dix Poppas serves as chief, reports that disagreement about infant genital surgery and its putative necessity is in the past; the site does not acknowledge that the practice remains controversial among specialist clinicians as well as patient advocates who have called for reform over the last 15 years.
Parents reading the Cornell Web site are also not informed that there is no evidence that having a big clitoris puts a girl at psychosocial risk. On the contrary, the Web site assures parents that plastic surgery performed between three and six months of age “is recommended because female patients are able to undergo a more natural psychological and sexual development.”
As Tamar-Mattis points out, the Web site also seems to promise that girls with CAH who undergo genital surgery at Cornell will have normal sexual function. It says, “Our approach to clitoroplasty leaves the patient with intact clitoral sensation, painless sexual arousal, a viable and sensate glans clitoris, and appropriate erectile function during sexual arousal.”
Risks of nerve damage, incontinence, urinary tract infections, inability to experience orgasm, or many other problems – including psychosocial problems – associated with genital surgery and follow-up receive no mention. According to Tamar-Mattis, “Parents who find out about these risks only after the fact may be very unhappy, and might even have legal claims against the surgeon and the hospital.”
In a recent conversation about this matter with Janet Green, a longtime patient advocate for girls and women with CAH and atypical genitalia, Green captured our own sense of frustration: “I had hoped this generation of parents would finally be beyond where the last several generations had been – wondering what they had consented to, what they had done to their children, thinking doctors always know best.”
Alice Dreger is Professor of Clinical Medical Humanities and Bioethics at Northwestern University’s Feinberg School of Medicine. Ellen K. Feder is Associate Professor and Acting Chair in the Department of Philosophy and Religion at American University.