Here's an interesting insight into the study. Make sure you read the whole thing to understand the intent behind those surgeries and what happened before they were performed.
I have a GI exam on Monday and I’m already a little sick of studying (only six more hours of course reviews and one more inch of lecture notes to go!), so I decided to do a little research on your medical ethics issue regarding female clitoral reconstruction. A quick Google search only returned faculty pages and postings on feminist blogs that were heavy on the outrage and light on the medical details. I did an exceedingly quick review of the primary literature and I think I understand what’s going on. As I said, I’m not condoning anything that happened, but the situation is a bit more complicated than the blog posts made it appear. I’m not making any ethical judgments, but I would like to provide a little context for what happened (and continues to happen). Also, I’m sorry that this turned into a big wall of text (tl;dnr, I know), but we just covered CAH like a month ago, so I’m excited that I know what’s going on. Anyway…
First, Dr. Dix Poppas is not some crazy guy with a knife, a urology license, and a hatred of women. It’s the chief of Pediatric Urology Institute at Cornell, he founded and runs the pediatric urology residency program, and he’s a pioneer in the field of minimally-invasive surgeries. He’s a world-renowned leader in reconstruction of congenital malformations, and, most importantly for us, he founded the country’s largest referral center for the management of a disease called congenital adrenal hyperplasia (more on that later). None of this makes him a good or ethical person, mind you, but he’s an extremely prominent and highly scrutinized figure who is actually winning awards and accolades for his work in this area.
Second, the procedures and studies described in the blog post were not the least bit shady. They were all part of a large, NIH-funded, institutionally approved, peer-reviewed research program. The paper on the technique can be found here: (J Urol. 2007 Oct;178(4 Pt 2):1802-6; discussion 1806. Epub 2007 Aug 17.) and a clinical review of its effectiveness (the stuff with the 6-y.o.’s with vibrators) can be found here (J Urol. 2007 Oct;178(4 Pt 2):1598-601. Epub 2007 Aug 16.) I can send you PDFs of those papers if you’re interested.
Third, this was NOT an elective cosmetic procedure performed on normal baby girls who just happened to have large clitori. I’m a huge fan of the breadth of the human experience, but (as I suspected) every member of the study had a disease known as classical congenital adrenal hyperplasia (wiki, eMD). The short version is that it’s an extremely common genetic deficiency of cortisol production. In most cases, it’s quite mild and easily managed with hydrocortisone supplementation. In some cases, however, the deficiency is almost complete and the patient presents as a newborn undergoing an Addisonian crisis (hypovolemic shock + low sodium). Unfortunately for some of us, cortisol is part of the same synthetic pathway as the sex hormones. Also unfortunately for some of us, the androgens come before the estrogens in the biosynthetic pathway. So, a severe case of CAH can also result in spillover of cortisol precursors into the formation of androgen hormones (specifically, DHEAS, Mark McGuire’s old supplement of choice). In females, this can result in pretty striking virilization of the external genitalia (including fusion of the labioscrotal folds and a phallic urethra), even to the point that the child is mistaken for a baby boy. I could send you the powerpoint from our CAH lecture if you’re interested, but you have to promise not to get me arrested for child porn (I have to be very careful about where I watch lectures). The eMedicine article has some pictures as well. Also, it’s important to remember that the normal sex hormone pathways are still fully intact, so the ovaries and uterus are typically fully formed and happily pumping out estrogen at the same time. If the child is maintained on appropriate cortisol supplementation, the androgen levels will drop and the child will typically undergo relatively normal puberty for their genotype and will have normal reproductive potential. I really don’t want to get into a discussion of gender assignment here, but I will say that the effects of androgens on the developing brain are extremely poorly understood and highly unpredictable. Current guidelines for children with genuinely ambiguous genitalia ideally involve a good deal of counseling and time for the child to express some sort of preference.
Fourth, it’s important to understand that congenital abnormalities are extremely common (1:33 live births have some sort of “major” abnormality somewhere, and this number increases with maternal age). Pediatric urologists, as a profession, essentially exist to correct these abnormalities. It’s what most of them spend most of their time doing every day. Any developmental failure involving the urinary tract or the colorectal area, for example, can affect the external genitalia. CAH is admittedly on the low end of the severity spectrum, but for comparison, I’d like to direct your attention to a condition called hypospadias (WARNING: PENIS PICTURE) (wiki, eMD), which affects 1:250 live male births. It’s where the urethra doesn’t completely zip closed in men, making it sort of the inverse of virilization in women. It’s routinely repaired shortly after birth and, in fact, forms the bulk of many pediatric urological practices. It’s not comparable in that it does not involve any hormonal or gender issues, but it should give you some idea of the professional mindset.
Fifth, it’s important to understand that no matter how you feel about it, reduction clitoroplasty is something that happens frequently everywhere in the country, and that we’re not particularly good at it. Dr. Poppas pioneered a new revision procedure which spared most of the major nerves and was expected to improve function, and the study was to evaluate its efficacy. Basically, he’s trying to fix all of those things that people were saying about reduced sensation and impaired sexual function. There were 51 trial participants. 92% of them were Prader Score III or higher, 33% were IV or V, and all were at least II (I’ll note that the line drawings do not do justice to the actual visual impact), so we’re not talking cliteri that were simply on the large side of normative, we’re talking cliteri that you can only get with an underlying medical condition. The stimulator tests were performed in a standardized manner according to a protocol which was approved by an institutional ethics board that included community members, and to which the parents consented and the subjects assented (that last bit’s a little complicated, but “assent” is very important in pediatric research). Alternatives were considered, and this is the best that anyone could come up with. As a quick aside, I just want to say that most people just don’t understand what simple, routine medicine involves, and much of it is some combination of highly shocking and outright illegal if done in a non-clinical setting. For example, I’m going to stick my fingers up hundreds of asses before I even get my M.D. (we practice rectal exams on trained professional actors, FYI). On a personal note, if I were a researcher on this study, I would be deeply insulted at the implication that I was conducting these stimulation tests for any reason other than the evaluation of a new, potentially game-changing surgical technique.
Sixth, and I’m just throwing this out here, but the older you are when you have these types of procedures preformed, the worse your outcome tends to be. Like, much worse.
So, to sum up: I’m not, in any way commenting on the ethics of gender assignment (which does not appear to be an issue here), or on the ethics of performing this procedure on patients who have not, as of yet, experienced any actual dysfunction. With that said, Dr. Poppas is not a monster, he’s actually trying to make things better. He’s not cutting up little girls willie-nillie at the behest of crazed Upper East Side Moms who want their daughters to have designer clitori, he’s working to mitigate the impact of a genetic condition that essentially gives both a penis and a vagina to individuals who will become biologically female. It’s a controversial procedure, and everyone involved is highly cognizant of that fact. Still, many parents do opt for revision, as do some adult CAH patients who were left unrevised. They presumably do so after full counseling as to the possible risks and likely outcomes. He’s not a pervert, he was only testing the effectiveness of a new and improved procedure that was expected to provide better sensation, and he was doing so under controlled and monitored conditions with everyone’s full informed consent. So, while this is absolutely an ethically complicated situation rife with gender, power, and conformist dynamics, the comparison to female genital mutilation is not only entirely unwarranted, but risks trivializing the very really horror of actual FGM.
tl;dr summarizing quote:
"He’s not cutting up little girls willie-nillie at the behest of crazed Upper East Side Moms who want their daughters to have designer clitori, he’s working to mitigate the impact of a genetic condition that essentially gives both a penis and a vagina to individuals who will become biologically female. It’s a controversial procedure, and everyone involved is highly cognizant of that fact. Still, many parents do opt for revision, as do some adult CAH patients who were left unrevised."