Bioethicists are raising alarms over pregnant women being treated with a drug called dexamethasone—a risky Class C steroid aimed at female fetuses that may have a form of congenital adrenal hyperplasia (CAH)—outside the context of IRB-approved clinical trials. Prenatal ‘dex’ treatment is known to carry certain health risks for mother and fetus (and sorry, I can’t seem to find a run-down of what those risks are, but they’re not the story, so just go with me that there are risks). Why take the risk?
The majority of researchers and clinicians interested in the use of prenatal “dex” focus on preventing development of ambiguous genitalia in girls with CAH. CAH results in an excess of androgens prenatally, and this can lead to a “masculinizing” of a female fetus’s genitals.
Risking the health of woman and fetus for the sake of avoiding ambiguous genitalia. Okay, seems dodgy, but we don’t know what the risks are; maybe they’re minimal. But then there’s more…
One group of researchers, however, seems to be suggesting that prenatal dex also might prevent affected girls from turning out to be homosexual or bisexual.
Pediatric endocrinologist Maria New, of Mount Sinai School of Medicine and Florida International University, and her long-time collaborator, psychologist Heino F. L. Meyer-Bahlburg, of Columbia University, have been tracing evidence for the influence of prenatal androgens in sexual orientation.
Yes. Now we see a problem. But alas it gets even worse…
And it isn’t just that many women with CAH have a lower interest, compared to other women, in having sex with men. In another paper entitled “What Causes Low Rates of Child-Bearing in Congenital Adrenal Hyperplasia?” Meyer-Bahlburg writes that “CAH women as a group have a lower interest than controls in getting married and performing the traditional child-care/housewife role. As children, they show an unusually low interest in engaging in maternal play with baby dolls, and their interest in caring for infants, the frequency of daydreams or fantasies of pregnancy and motherhood, or the expressed wish of experiencing pregnancy and having children of their own appear to be relatively low in all age groups.”
In the same article, Meyer-Bahlburg suggests that treatments with prenatal dexamethasone might cause these girls’ behavior to be closer to the expectation of heterosexual norms: “Long term follow-up studies of the behavioral outcome will show whether dexamethasone treatment also prevents the effects of prenatal androgens on brain and behavior.”
So, it’s not just that they may turn out to be lesbians: they may turn out to be lesbians who want to enter the workforce!
Researchers working on an interesting project tend to suggest how their work could have broader implications. This is no exception: the 2008 paper by Meyer-Bahlburg et al hints that variation in sexual orientation beyond the population of girls with CAH might also be partly explainable through prenatal androgen exposure. Such reasoning could lead to the pursuit of other “screening” and “treatment” methods for manipulating intrauterine environments.
While everyone has been busy watching geneticists at the frontier of the brave new world, none of us seem to have noticed what some pediatricians are up to. Perhaps it is because so many people are fascinated by the idea of a “gay gene” that prenatal “lesbian hormones” have slipped past public scrutiny. In any case, we think Nimkarn and New’s “paradigm for prenatal diagnosis and treatment” suggests a reason why activists for gay and lesbian rights should be wary of believing that claims for the innateness of homosexuality will lead to liberation. Evidence that homosexual orientation is inborn could, instead, very well lead to new means of pathologization and prevention, as it seems to be in the case we’ve been tracking.
“Risking the health of woman and fetus for the sake of avoiding ambiguous genitalia. Okay, seems dodgy, but we don’t know what the risks are; maybe they’re minimal.”
Umm… maybe I’m misreading you here. But it sounds like the reason you think it’s dodgy is primarily because of the possible risks, rather than because it’s enforcing “normal” genitals.
If that’s the case, I must disagree with your reasoning. Even if it carried absolutely no medical risks, it’s still dodgy. The idea of “normal” genitals is society’s problem, not the problem of the individual who has genitals outside that norm. Sure, it might make their life easier. But one could say that about the other issues you listed too, in that they would fit socially expected norms better.
Society is the problem, not their genitals. So it’s a problematic idea even if it carried zero risk.
cessen, i agree entirely. but i think it makes it worse that they’re actually endangering the health of two individuals in the process of enforcing this norm. i didn’t mean to imply that it’s bad just because there’s a health risk: i meant to imply (something like) two wrongs make a super-wrong.
I gather that one different CAH women MAY have is the lack of a vagina that can sustain heterosexual intercourse. I also understand that the urinary tract, unsurprisingly, may not function well. I’m just not sure that I’d say those are merely a matter of societal norms. (I do know the urinary tract is distinct from the genitals, but the two go together.)
I completely agree in general terms that it is society’s attitudes that make gender differences problematic. And that’s wicked.
Instead of “gender differences,” it probably ought to be “infrequently occurring gender differences”.
And I forgot to thank you, elp, for bringing out the downside to the identification of the biological causes of differences. It is pretty sickening to see there’s so little tolerance for being glbt. Their loss would leave us genuinely impoverished.
More info here:
http://www.time.com/time/health/article/0,8599,1996453,00.html
And Lindsay Beyerstein has an interesting discussion here:
http://bigthink.com/ideas/20721
extendedlp:
Ah, okay. I just misread you. I totally agree with the post then. :-)
I’m not defending the specific risks of this treatment, and I’m certainly not in favor of physicians doing experimental human subjects reasearch without IRB approval.
But there’s a bit more to CAH than just “their genitals don’t meet societal norms.” I think we’re running the risk here of assuming that in any case where a birth defect (and this is a defect, not “it’s just different”) involves ambiguous genitalia, then it shouldn’t be corrected no matter what else is involved. That’s kind of a bizarre position.
http://emedicine.medscape.com/article/919218-overview
J-Bro, I have been quite worried that the bioethicists have been simplifying things.
One question is whether they really are doing research without approval. What they are doing is using a drug for a not-approved reason. But that’s done all over the place and it isn’t described as illicit research.
As far as I can see, the idea (which seems to me right) is that their use of the drug should be considered experimental and so subject to approval. That seems morally different.
I have also to confess that it seems to me that the second picture of the masculinized genitals might raise honest questions for the parent about what’s good for the child. Someone who is internally female but has which looks to be a fairly sizable penis might have serious problems. I suspect I’d grit my teeth and say no operation as long as the urinary tract was in tact, etc., but it would not be an easy decision.
My son, who is gay, had mildly gender atypical behavior; he fit right into a choir school, with hetero boys, but he stood out in other contexts. Until high school he had plenty of friends, but teachers and parents were pretty awful, especially to me.
I would not be surprised to find some teachers would allow and maybe even encourage brutal bullying of the child.
I’m a straight woman, and I have never had daydreams or fantasies of pregnancy and motherhood, ever. And I daydreamed and fantasized a lot as a child. Do most straight women have such daydreams and fantasies?
This is not a rhetorical question. This is the first time I’ve heard of such a thing.
restructurel, what a wonderful question. If others respond, I’ll be glad to contribute my own experience of discovering that for a very brief time pregnant women are important.
i never did. in fact, i always felt pretty certain i wanted nothing to do w having children! and i have two now and they’re fab, but i still don’t feel like a baby-daydreaming sort of a woman.
here’s another story about this: http://io9.com/5577804/a-drug-for-pregnant-women-that-prevents-lesbian-daughters
interestingly, it says that this ‘dex’ treatment doesn’t actually treat or cure or prevent CAH: all it does is make the genitals more ‘normal looking’ and make the girls (in theory) more ‘girlie’:
‘It may prevent ambiguous genitals in girls, but it doesn’t help the underlying condition. Many of the women receiving dex treatment don’t realize that the drug doesn’t cure CAH, and are shocked to find out that it’s not approved by the FDA. Time offers this story:
Jenny Westphal, 24, who took dexamethasone throughout her pregnancy at the recommendation of another doctor, says she feels misled . . . Her daughter, now 3, who has CAH, has also had serious and mysterious health problems since birth, including feeding disorders, that are not commonly associated with her adrenal-gland disorder.
But New would probably count this as a triumph: Westphal’s daughter has perfectly normal genitals. Maybe she’ll even grow up to be a heterosexual.
This is particularly disturbing, and I think the part that is disturbing is the apparent conflation between real health issues, and fake health “issues” that are the product of social causes. Cases of ambiguous genitals in infants are not legitimate health issues unless the condition causes other problems that threaten the patient, as millions of healthy people are born with ambiguous genitals. Finding a “cure” for ambiguous genitals is not appropriate unless it remedies a real problem.
Just to follow up, I’m aware that the medication is billed as a part of the treatment of CAH (which does cause legitimate health issues in many cases), but the focus is on the “treatment” of ambiguous genitalia simpliciter, which is not a legitimate health issue in its own right.
Restructure- I’m in the same boat as you, but I have many female friends who did.
When I was little I dreamed of flying like a bird, riding unicorns through fantasy worlds, becoming a marine biologist, an Olympic swimmer, a blues singer, a pirate queen, playing a crazy hack-n-slash chick in b movies–ANYTHING BUT cleaning floors and laundry and wiping poopy bums. I did have a few childhood friends who wanted to play mommy&baby games with their dolls, but I preferred playing Hulk, Superfriends and Starwars games with the boys. I could spin around like Wonder Woman and fly away in my invisible jet.
There was a phase in my teens when I thought I should be prettier so I could have a nice boyfriend. Then I lost the weight and my acne cleared up and I discovered that jock/musician boyfriends were highly overrated.
So I went back to roleplaying (that’s cosplay to you young’ns)with my geek LARPie friends, hitchhiked all over the continent, tried to take up the guitar (but discovered that I suck at that), snuck into karaoke bars when I was underage to practise singing the blues, and rebelled against girlie things for as long as I could. I thought marriage-minded girls were insane.
I’m glad nobody started poking at my genitals to see if they needed chemical modification.
Xena, I seem to recall you picking out names for your imaginary future children, as a teen. But that’s about it. I think I even remember a couple of them…heh.
And I’m not sure I’d quite cop to the “straight” designation, but I can say that the childhood fantasies I recall usually involved fast cars of some sort…As phallic as that may be. :) And no doubt fuelled by the Dukes of Hazzard. I think I fantasized a lot about being a knight of some kind in Narnia (NEVER a princess!), despite Lewis’ admonitions that “War is ugly when women fight.” More phallic symbols. Arrows, like Susan, not a knife like Lucy. :)
I can also say that marriage and babies never interested me much, hell I don’t like doing my own laundry, let alone anyone else’s. And when I thought of what I’d be when I grew up, mommy was never it. Worldly, maybe, rich definitely, but Mommy? Ick.
Did anyone else try desperately to conceal howls of laughter when reading this? As disturbing as it is, the thought of somehow de-gay-ing a potential lesbian fetus is absurd. Especially when your other option is what? A neuter? A boy? Genitalia doesn’t really tell the whole story, does it?
Oh, right. I just thought they were cute names. Really. I wasn’t planning on having kids. Some of the weirdest stuff went through my head back then. Still does. My brain-to-mouth filters are better now–er, I think.
Thanks for the nice article of medical subject