A Time magazine article came out earlier this month discussing a steroid called dexamethasone, which Maria New, a pediatric endocrinologist and researcher at Mount Sinai Medical Center — and one of the world’s foremost experts in congenital adrenal hyperplasia, or CAH — has advised pregnant women to take to prevent CAH in their daughters. (CAH is an adrenal problem caused by overexposure to male hormones in the womb that can result in developmental abnormalities, including girls being born with “ambiguous genitalia” but normal internal sex organs.)
This week, a slew of websites pretty passionately weighed in on the topic of dex, which some called “anti-gay genetic engineering,” and others described as “unbelievable,” and “unequivocally experimental and risky.”
Among the issues inciting various levels of rage among the websites discussing the matter:
1. Dex has never been approved by the FDA for treating CAH in utero, and New is recommending it based on a Swedish study of 26 people. According to a woman interviewed by Time who used the drug, neither New nor her prescribing physician mentioned that it was an “off-label use” (an application not specifically approved by the government). Nor was she told that the medical community is divided in its feelings on the drug.
Problem: We want our doctors to know the truth, and we want them to tell us when they don’t. Some say New is making the drug look and sound safe when really it’s not.
2. In a tape of a presentation New gave to parents nine years ago, she talks about the challenge of restoring a baby “to the normal female appearance which would be compatible with her parents presenting her as a girl, with her eventually becoming somebody’s wife, and having normal sexual development, and becoming a mother … nothing should stop that, if we can repair her surgically and help her psychologically to continue to grow and develop as a girl.”
Problem: Phrases like “normal female appearance” and describing the ultimate goal of womanhood as “becoming somebody’s wife and mother” make people mad. Should “repair” be equated with restoring preconceived notions of sexuality?
3. Since CAH women tend to show less interest in getting married and becoming housewives and having babies, some say New is also trying to, basically, get rid of lesbians, or women who “act like” lesbians.
As Dan Savage writes,
So no more Elena Kagans, no more Donna Shalalas, no more Martina Navratilovas, no more k.d. langs, no more Constance McMillens — because all women must grow up to suck dick, crank out babies, and do women’s work. And the existence of adult women who are not interested in “becoming someone’s wife” and “making babies” constitutes a medical emergency that requires us to treat women who are currently pregnant with a dangerous experimental hormone. Otherwise their daughters might grow up to, um, be nominated to sit on the Supreme Court, serve as cabinet secretaries, take 18 Grand Slam singles titles, win Grammies, and take their girlfriends to prom.
Problem: This is the slippery slope argument of genetic engineering — weeding out the “bad” babies creates a dangerous social situation, a/k/a, genetic engineering. Plus, who’s to say what’s bad?
4. Dex may prevent ambiguous genitals in girls, but it can’t cure CAH.
Problem: It doesn’t even work, not really. Well, that depends. So far as making girl-parts look like girl-parts, it seems to be effective (and maybe that’s effective enough — see the Awl’s explanations of “ambiguous genitalia”). But it can also create other problems, and it doesn’t “cure” the disease itself. Still, for parents, the benefits of sparing their daughters from those sure-to-be tricky “What am I?” conversations (and possible surgery) may make it worth the risks.
Of course, there are all sorts of other questions … Is dex a parental anxiety drug rather than medication to treat a child’s condition? Should New have just kept her mouth shut about its “gender behavior modifying” aspects and her seeming desire to “normalize” women who may not be interested in men or motherhood?
Beyond that, could the drug actually do harm? Doctors, apparently, are allowed to get around FDA regulations and use their discretion prescribing it off-label, which makes it additionally scary — but perhaps no different than a number of other drugs that are treated that way. Upping the ante is that most pregnant women would do just about anything to have a healthy or “healthy” child — is it unfair to put them in this position?
The issue is indeed complicated, and as Maria Bustillos writes,
“It’s not fair to suggest that parents who are worried about the possible complications and problems their child might face as the result of being born with ambiguous genitalia, and who are offered a medical intervention that might help, are simply trying to avoid having a lesbian daughter.”
Agreed. Then again, a lot of things aren’t fair. But now that we find ourselves in a position to make choices about things never before possible, it seems we need to try even harder to make sure we are informed — and be even more diligent about doing the right thing, whatever it is, and on whichever side of the table we sit.