In the world of intersex patients, there are a host of genital ambiguities, underlying causes, and methods to differentiate between the sexes. Often these methods include plastic surgery on the genitalia before the patient reaches puberty. In the case of clitoromegaly (a larger-than-normal clitoris), the current surgical practice, when surgery is performed at all, is what is called “Nerve sparing ventral clitoroplasty.” This surgical technique removes ventral clitoral tissue while attempting to preserve the dorsal nerve bundle. The idea is to “correct” the size abnormality while leaving functional sensation intact. Leaving behind the issue of whether this surgery is necessary, how should the medical community go about testing the hypothesis that this surgery is successful in preserving sensation?

In a study published in 2007 in the Journal of Urology (Vol. 178, pp. 1598-1601), Yang, Felsen, and Poppas describe testing the clitoral sensation of 10 patients who, prior to the study, underwent the aforementioned clitoroplasty. Poppas examined these 10 patients, who were at least 6 years old, by using a cotton swab to stimulate their thigh, major and minor labia, vaginal introitus, and clitorus. Patients were asked to score the amount of sensation (0 = no sensation, 5 = most sensation). Additionally, 9 of these patients underwent similar testing with a “vibratory device.”

There are at least three major problems with this study. First and foremost is the moral objection. In any other situation, a fully grown man touching an underage girl’s clitoris would be considered sexual abuse. Children under the age of consent should not be subjected to this sort of inappropriate touching. Full stop. The fact that their parents sat with them while this inappropriate touching was going on does not mitigate the abuse. In actuality, since these parents gave their, presumably informed consent to this test, they are just as culpable as the medical personnel who perpetrated the abuse. If the parents were, however, not fully informed, that mitigates their culpability. And this idea of informed consent leads us to the second objection.

Tied in with the moral objection is the legal one. Federal regulations stipulate that medical research involving human subjects must be approved by an institutional review board, before being conducted. Special protections for children are also stipulated and generally include minimizing risk to the child and asking for the child’s assent when possible. While Poppas et al. do report IRB approval for their retrospective chart study of patients who underwent clitoroplasty, it is unclear from the publication if they also have approval for the clitoral sensitivity testing. (And if they do have IRB approval, the question then becomes: What was the IRB thinking?) Since the purpose of the testing is to accrue data and has no direct benefit to the patient, this is clearly medical research and must be supervised by an IRB. This brings up questions about how this research was conducted. How well were these parents informed? Did they understand the psychological risks to their children before the testing? Did they know they could refuse to participate? Were the children informed and asked for their assent? Without knowing the exact details of the IRB’s involvement prior to this study, it is hard to say where the legal culpability lies, but for this to have happened at all, somebody dropped the ball.

Beyond the moral and legal appropriateness of this study, my final objection is scientific. This study does not represent sound science. This subjective scale is unreliable in and of itself, and is even more so when you consider that a child is the one giving the subjective score. In addition to this unreliability, this “measure” of clitoral sensation in a clinical environment in a child who has no idea about sex is completely irrelevant to the sexual functionality of the clitoris. We have no idea what is “normal” clitoral sensation for a child this age, nor do we know what any level of sensation means for the child once she grows to adulthood. If the goal of the study is to ask the question of whether this sort of surgery preserves clitoral sensation and sexual function, then the authors should ask the question after these patients have become consenting adults who have sexual experience.

The issues surrounding intersex patients and their medical regimen are varied and myriad. Relevant to this discussion, the debate on the appropriateness and timing of reconstructive surgery on the genitalia is currently unresolved. There is no evidence that plastic surgery like clitoroplasty improve psychosocial outcomes in patients; there is no guarantee that the sex assigned will correspond to adult gender identity; and the removal of any clitoral or phallic tissue might impair future sexual function. We should not burden the patients, families, and medical personnel involved in these intersex dilemmas by allowing this morally abhorrent, illegal, and scientifically meaningless research to continue.