Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis made headlines this week with a post on Bioethics Forum entitled “Preventing Homosexuality (and Uppity Women) in the Womb?” The headline made it sound as if someone wanted to treat lesbianism in general. Predictably, the post touched off an online moral panic.
If you read more carefully, you find that this is a debate over how to manage an inherited error of metabolism called congenital adrenal hyperplasia (CAH). Patients with CAH lack an enzyme that converts androgen precursors into cortisol. Even in utero, their adrenal glands are pumping out androgens, which can cause girls to be born with male-looking genitals. As I explained earlier, the potential medical consequences of virilization go far beyond cosmetic appearance or even gender presentation. In severe cases, the patient may need multiple painful surgeries to create separate vaginal and urethral openings. Dreger and her colleagues dismissed dex as “fetal cosmetology” until they were called to the carpet by authors from Harvard who forced them to acknowledge the medical consequences of severe masculinization. The ill-effects include incontinence, kidney damage from recurrent UTIs, vaginal narrowing that interferes with menstruation and the future ability to have PIV intercourse. Girls may need multiple painful surgeries to correct these abnormalities.
If a pregnant woman takes the steroid dexamethasone, the drug can shut down the fetus's adrenal glands and allow the genitals to develop normally. (By “normally,” I mean the way they would have developed without the disease.)
Doctors have been using dex to prevent ambiguous genitalia in girls with CAH for about 30 years. Nobody disputes that the drug is very effective at preventing or diminishing masculinization, but there's not unequivocal experimental evidence that dex is safe over the long term. It's not that there haven't been follow-up studies. There have been many. By and large, they've been unable to establish harmful effects of prenatal dex. However, skeptics worry that these studies are too small or too badly designed to detect the risks if they exist. Every drug has side effects, but these have to be balanced against the benefits of treatment, and we do know that dex works really well at preventing serious birth defects.