The Ethics of Early Intersex Intervention

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After a polite introduction and short applause, Alice Dreger approached the podium. “The question I’m really asking today,” she began, “is should we be afraid of big clitorises?”

Dreger, a professor of clinical medical humanities and bioethics at Northwestern University, was on campus in October to deliver the R. Jean Brownlee [Ed’34 Gr’42 Hon’86] Lecture in Sexuality Studies. Her address—“What to Do When Medicine Runs Amok in Pursuit of Normality?”—explored a sexuality issue that has a bioethical dimension: the controversy surrounding a novel treatment of congenital adrenal hyperplasia. CAH is an inherited endocrine disorder that interferes with the body’s production of sex steroids, beginning in the womb. One result can be ambiguous genitalia—for girls, enlarged clitorises. About one in 15,000 children is born with CAH.

In recent years, some doctors have begun administering the drug dexamethasone to pregnant women whose fetuses are at risk of being born with CAH. Prenatal dex, as the treatment is commonly called, does not treat the underlying disease, but it can shrink the clitorises of female fetuses that inherit it. Dreger took aim at this practice.

“This is a drug being given specifically to change the body—to change the direction the body is going in. Dex does not prevent or cure the disease that is CAH,” she said. “It’s aimed at preventing girls with big clitorises, girls with labia that might look a little bit more like a scrotum, girls that might have shorter vaginas.”

Yet enlarged clitorises “are not life-threatening,” Dreger said—whereas this off-label use of dexamethasone may be dangerous.  

Dreger contended that doctors may be treating a “harmless” symptom simply because it is “socially disturbing.” The drugs, as well as risky surgeries (which may compromise genital sensation), she said, are an attempt to normalize what is perfectly healthy. With doctors divided on the issue and mothers often left misinformed, girls with CAH have had major alterations to their genitals and future sexual lives without even the possibility of their consent.

Commenting on the issue after the lecture, Art Caplan, Penn’s Emanuel and Robert Hart Professor of Bioethics, said: “This really is a battle about if you want to do—to put it one way—gender engineering. Are women, by biology, going to be more masculine if they’re not treated? Are they likely to be feminized if they get treatment? That obviously involves every possible stereotype about male and femaleness … So it’s controversial.” 

Caplan laid out the contrasting scenarios parents-to-be might face. “If you’re a nervous mom, a nervous couple, and the doctor says, ‘We need to intervene so your child doesn’t have abnormal sexual organs.’ ‘Well, okay! That sounds good to me.’ But if your doctor says, ‘Well, you know your child has the possibility of being different, but still normal,’ that’s probably going to be advice that leads to not much intervention.”

One of the things that makes the ethics of intervention particularly thorny, Dreger noted, is that prenatal dex is administered so early in pregnancy—as early as week five—that doctors often don’t even know if the fetus has the symptom it targets. 

“Out of every eight fetuses who are exposed to this very powerful drug,” she explained, “only one of them will turn out to be a girl with CAH … Four out of eight will be boys, [and] three out of four [girls] will turn out not to have CAH,” which is a recessive trait.

In laying out her anti-interventionist case, Dreger stressed that she doesn’t consider herself an “identity-rights activist.”

“I don’t come to these things and say there’s something magical and special about ambiguous genitalia,” she said. “I don’t believe that. What I believe is that we should approach medicine in a scientific fashion, express what it is that we want to achieve, and use the best science possible to achieve that.”

And a “profoundly unscientific” fear of big clitorises, she concluded, is an obstacle that stands in the way.

—Laura Francis C’13 

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