by Gwynn Guilford
Amanda Schaffer details the latest news in the controversy surrounding the off-label use of dexamethasone to prevent girl babies from developing masculinized genitalia (Schaffer links to examples here and here):
[I]n June, researchers in Sweden, who have conducted some of the most rigorous research on the treatment since the late 1990s, announced that they would no longer enroll new patients for fear of long-term side effects. And last month, the record of the best-known American champion of the drug [Dr. Maria New] was questioned when patient advocates charged she’d misrepresented her work to patients and the government.
The Swedes documented some significant risks – particularly cognitive problems:
[O]ver a decade ago that in a group of 43 dex-exposed children, eight had severe medical issues: one had a developmental delay, one had “mental retardation” and one had “severe mood fluctuations that caused hospital admission.”
This all the more disquieting given that only one in eight fetuses that would be recommended to receive the dex treatment would actually stand to benefit from the anti-virilization treatment, notes Schaffer.
If this all sounds vaguely familiar, it's because we've wandered these bioethical bowers before – when Dan Savage and Alice Dreger, a leading expert on intersex issues, publicized New's research in 2010. At the time, Dish coverage focused on the eugenic gist of New's stated objectives, beyond simply genital virilization. Money quote from Dan:
Pediatric endocrinologist Maria New—of the Mount Sinai School of Medicine and Florida International University—isn't just trying to prevent lesbianism by treating pregnant women with an experimental hormone. She's also trying to prevent the births of girls who display an "abnormal" disinterest in babies, don't want to play with girls' toys or become mothers, and whose "career preferences" are deemed to "masculine."
Reader pushback at the time focused on the "gay cure" and its religious implications, though also on the considerable health risks of CAH aside from genital masculinization (most severely, something called "salt-wasting"). However, prenatal dex is prescribed exclusively to block "excessive adrenal androgen production" in the ninth week of gestation that's responsible for virilizing female genitalia. Lindsay Beyerstein argued, though, that preventing virilization was still a worthy medical aim:
[T]he 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.
When pressed, even Dreger admits that most doctors who prescribe dex are only trying to prevent birth defects. Of course, the authors aren't lifting a finger to clear up the misconception they caused with their initial post, namely that prenatal dex is intended to prevent lesbianism…. If you wanted to be a crackpot about it, you could just as easily argue that dex is a conspiracy to turn boys gay. Prenatal dex makes male rats more receptive to being mounted by other males.
That might all seem moot now given the latest findings of the effects of the treatment. However, New's work at Mount Sinai continues, bolstered by what Dreger and company (PDF) argue is still more dodgy research.