The controversy over using female hormones as part of prenatal care isn’t quite as shocking as the headlines suggest, but it does raise important questions about ethics, gender, and sexuality.
Genetic engineers, move over: the latest scheme for creating children to a parent’s specifications requires no DNA tinkering, but merely giving mom a steroid while she’s pregnant, and presto—no chance that her daughters will be lesbians or (worse?) ‘uppity.’
Or so one might guess from the storm brewing over the prenatal use of that steroid, called dexamethasone. In February, bioethicist Alice Dreger of Northwestern University and two colleagues blew the whistle on the controversial practice of giving pregnant women dexamethasone to keep the female fetuses they are carrying from developing ambiguous genitalia. (That can happen to girls who have congenital adrenal hyperplasia (CAH), a genetic disorder in which unusually high prenatal exposure to masculinizing hormones called androgens can cause girls to develop a deep voice, facial hair, and masculine-looking genitalia.) The response Dreger got from physicians and scientists who were outraged over this unapproved use of dexamethasone caused her to dig deeper into the scientific papers of the researcher who has promoted it.
The result of that digging is a discovery that is much less outrageous than the PR push, and some media coverage, would have you believe, but one that nonetheless raises important questions about gender, sexuality, and research on unknowing patients.
In an essay titled “Preventing Homosexuality (and Uppity Women) in the Womb?” and posted on the bioethics forum of The Hastings Center, a think tank in Garrison, N.Y., Dreger and her colleagues pluck numerous brow-raising statements from the writings of pediatric endocrinologist Maria New of Mount Sinai Medical Center in New York, who has long promoted prenatal dexamethasone to treat CAH. But if that position is controversial (as I’ll explain below), what Dreger and her colleagues claim to have uncovered is even more so. New, they say, wants to use dexamethasone to prevent CAH girls from becoming lesbians, from rejecting motherhood, and from choosing traditionally masculine careers.
This charge is stirring the predictable outrage, as in this Huffington Post item, which makes it sound as if some scientists are promoting the use of dexamethasone to prevent lesbianism—even tomboyishness—in all female fetuses. The press release from Northwestern is even more hyperbolic: “FIRST EXPERIMENT TO ATTEMPT PREVENTION OF HOMOSEXUALITY IN WOMB,” it screams, going on to describe how Dreger and colleagues are bringing “to national attention the first systematic approach to prenatally preventing homosexuality and bisexuality. The ‘treatment’ is targeted at one particular population of girls, but the researchers involved in the work say their findings may have implications beyond this population.”
The facts are more complicated.
New has indeed argued that prenatal androgens can affect a woman’s sexual orientation, her interest in becoming a mother and housewife, her interest in traditionally masculine careers, and—in childhood—whether she plays with dolls or trucks. I have written before on the many problems with research on such gender differences, and a book that Harvard University Press will publish in September, called Brain Storm: Flaws in the Science of Sex Differences, argues that studies claiming to find innate, sex-based brain differences are seriously flawed.
But to be fair, the idea that exposure to prenatal hormones can shape sexual orientation goes back decades, as in this 1985 paper. So New is in ample company when she and colleagues write that that there is “a dose-response relationship of androgens with sexual orientation” in women with CAH. (That’s from her 2008 paper in Archives of Sexual Behavior.) Prenatal androgens, they argue, affect sexual orientation, with the result that although “most [CAH] women were heterosexual,” the “rates of bisexual and homosexual orientation were increased above controls ... and correlated with the degree of prenatal androgenization.” From that, Dreger and her collaborators infer that New is proposing that women pregnant with a CAH daughter use prenatal dexamethasone to keep the girl from being gay.
Dreger then pounces on a 2010 paper in which New goes further. In Annals of the New York Academy of Sciences, New and a colleague suggest that women having little interest in babies and men, and being drawn to traditionally male occupations and games, is “abnormal.” Moreover, they argue, that abnormality might be prevented with prenatal dexamethasone. “Gender-related behaviors, namely childhood play, peer association, career and leisure time preferences in adolescence and adulthood, maternalism, aggression, and sexual orientation become masculinized” in CAH girls and women, they write. “These abnormalities have been attributed to the effects of excessive prenatal androgen levels on the sexual differentiation of the brain and later on behavior ... We anticipate that prenatal dexamethasone therapy will reduce the well-documented behavioral masculinization ...” in CAH girls.
“It seems more than a little ironic to have New… [construing] women who go into ‘men’s’ fields as ‘abnormal.’ And yet it appears that New is suggesting that the ‘prevention’ of ‘behavioral masculinization’ is a benefit of treatment [with prenatal dex]. In a 2001 presentation to the CARES Foundation (a videotape of which we have), New seemed to suggest to parents that one of the goals of treatment of girls with CAH is to turn them into wives and mothers. Showing a slide of the ambiguous genitals of a girl with CAH, New told the assembled parents: ‘The challenge here is ... to see what could be done to restore this 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....’
An e-mailed request to speak with New resulted in
an automated reply that she is out of contact until July 13; Mount Sinai
told this reporter they were unable to reach her. [Update: After this
story was first published, New, via the Mount Sinai press office, issued
this statement to NEWSWEEK: “I have received IRB approval for the
long-term evaluation of children who have received treatment with
prenatal dexamethasone for congenital adrenal hyperplasia. In my six
years at Mount Sinai I have not administered the drug to any woman for
the purpose of treating an unborn child. Allegations that my goal is to
prevent lesbianism are completely untrue.”]
Even a casual reading of New’s papers, however, shows that she is not advocating the use of prenatal dex to turn all female fetuses, or even CAH fetuses, into Stepford Wives. Her aim seems to be to treat CAH girls so that not only their genitalia, but also their brains, are clearly female, something she believes will make life easier for them. In her eyes, she is simply righting a genetic wrong, giving CAH girls the biology that a genetic mutation sent awry.
New’s promotion of prenatal dexamethasone to treat CAH girls, as Time described in a story last month, has Dreger on the warpath. Because the FDA has not approved this use of dexamethsaone, and because the pregnant women are not enrolled in a formal clinical trials, Dreger said by e-mail, the CAH girls are “being used as a de facto research population for the exploration of sex, sexual orientation, and gender. But there is not proper ethics protections in place for this research, which means these girls (and in the case of dex, their mothers) are in experiments without being told that they are, and without the protections in place that are supposed to safeguard them.” On that, the medical establishment is behind Dreger. Because prenatal dexamethasone to treat CAH girls is an off-label use (that is, not approved by the FDA, although physicians are free to prescribe any drug for any purpose they like), professional guidelines call for it to be administered this way only in a carefully controlled research setting. Mount Sinai has said that New no longer prescribes dexamethasone in her own practice. But when pregnant women consult with her she has arranged for them to receive the treatment through their own doctors. Half a dozen medical societies have signed on to a statement recommending that prenatal dexamethasone therapy for CAH “continue to be regarded as experimental, and be pursued only” in research settings.
This consensus, says Dreger, “is a sign that the medical establishment is responding directly to the bioethicists’ outcry that [CAH fetuses and their mothers] have been experimented upon without oversight, without proper consent.”
Dreger and Feder are no strangers to controversy. Last month they exposed the practice of pediatric neurologist Dix Poppas of Weill Medical College of Cornell University, who removes parts of the clitorises of young CAH girls. The surgery is controversial enough, since there is a intense debate over whether a large clitoris—“ambiguous genitalia”—causes psychological problems. But what “stunned” Dreger and Feder, they wrote, is that the doctors touch the girl’s “surgically shortened clitoris with a cotton-tip applicator and/or with a ‘vibratory device,’ and the girl is asked to report to Poppas how strongly she feels him touching her clitoris. Using the vibrator, he also touches her on her inner thigh, her labia minora, and the introitus of her vagina.”
Both cases—cutting a clitoris surgically, feminizing a brain through hormone treatments—reflect an almost desperate attempt by some doctors and scientists to keep their patients from straying from gender norms. It may all be well-intentioned, a reflection of the view that a nail that sticks up will be hammered down and so it is better to conform. What makes both the clitoral surgery and the prenatal steroids so cringe-inducing, however, is that they seems like throwbacks to the 1950s, not only culturally (when there was really only one way to be female, and it came with an apron and kids) but scientifically (when anatomy and biochemistry were destiny). If the hue and cry over what Dreger has uncovered shows anything, it is that although many of us thought the modern, scientific west had moved beyond those views, many in the medical and scientific community have not.