Alice Dreger, Ellen K. Feder, and Anne Tamar-Mattis made headlines this week with a post on Bioethics Forum entitled "Preventing Homosexuality (and Uppity Women) in the Womb?" The headline made it sound as if someone wanted to "treat" lesbianism in general. Predictably, the post touched off an online moral panic.
If you read more carefully, you find that this is a debate over how to manage an inherited error of metabolism called congenital adrenal hyperplasia (CAH). Patients with CAH lack an enzyme that converts androgen precursors into cortisol. Even in utero, their adrenal glands are pumping out androgens, which can cause girls to be born with male-looking genitals. As I explained earlier, the 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.
If a pregnant woman takes the steroid dexamethasone, the drug can shut down the fetus's adrenal glands and allow the genitals to develop normally. (By "normally," I mean the way they would have developed without the disease.)
Doctors have been using dex to prevent ambiguous genitalia in girls with CAH for about 30 years. Nobody disputes that the drug is very effective at preventing or diminishing masculinization, but there's not unequivocal experimental evidence that dex is safe over the long term. It's not that there haven't been follow-up studies. There have been many. By and large, they've been unable to establish harmful effects of prenatal dex. However, skeptics worry that these studies are too small or too badly designed to detect the risks if they exist. Every drug has side effects, but these have to be balanced against the benefits of treatment, and we do know that dex works really well at preventing serious birth defects. This graphic shows what masculinization in CAH looks like.
There is a lot of clinical evidence that this therapy is generally safe and well-tolerated. Note that patients with CAH must take dex or a similar hormone-replacing drug for the rest of their lives. So, when it comes to female fetuses with CAH, we're really just arguing about how early to start the treatment.
Now, Dreger and her co-authors are accusing prominent pediatric endocrinologist Dr. Maria New of pushing dex on pregnant women as a "cure" for lesbianism or tomboyishness. It's true that girls with CAH are more likely to be tomboys as children and more likely to identify as lesbians as adults. However, we already know that the vast majority of these girls grow up to identify as straight even without the dex. Of course, most lesbians don't have CAH or anything other hormonal condition.
There has been a lot of research on CAH and gender development, not in order to "cure" these girls, but simply to understand how their brains work. CAH provides fascinating insights into the nature-nurture debate. These girls are genetically and anatomically female, but they have been exposed to high levels of androgens in the womb, which have some predictable effects on their brains.
It would be interesting to know if prenatal dex prevents brain masculinization as well as genital masculinization. New wants to study this question. That doesn't necessarily mean that she sees tomboyism or lesbianism as problems that need to be corrected. This whole pseudo-scandal is based not on New's stated intentions but on inferences that her critics have made from remarks they cite out of context. These critics have committed one act of bad faith after another. We shouldn't assume that they are interpreting New fairly.
But if you're going to try to protect the genitals anyway, why not study the brain effects? Dreger and her colleagues are always complaining that there isn't enough long-term research, but when a physician they don't like tries to undertake long-term research they slander her.
It appears that Dreger and her colleagues have cherry picked a few quotes from Dr. New talking about sex differentiation and the brain in CAH and used them to accuse her of crusading against lesbianism or masculine gender roles. You could take similar quotes out of context to "prove" that a lot of my college professors and their colleagues were in on the conspiracy--when in fact they were just neuroscientists who thought CAH was an interesting subject of study.
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. Some studies have shown that maternal stress during pregnancy predisposes male offspring to homosexuality. Some researchers think this effect could be caused by steroids like dex. Dreger and Dan Savage may not know the literature, but you can be sure that endocrinologists are well aware of these theories.**
The biggest ethical conundrum about prenatal dex is that treatment has to be started blind. The treatment only works if it starts between 6 and 7 weeks' gestation, but it's impossible to sex the fetus or test for CAH until 10 weeks. Boys can get CAH, but they don't benefit from dex. Of course, the dex is stopped as soon as doctors can determine that the fetus is male and/or CAH-negative. Newer tests are being developed that enable earlier sorting.
If you start the drug blind, half the fetuses will be males who don't need it. If the parents are asymptomatic carriers of the CAH gene, chances are 1 in 4 that they will conceive a child with CAH. Statistically, only one in 8 pregnancies will be a female with CAH.
So, 4 boys (and 3 unaffected girls) will be exposed unnecessarily to dex for every 1 girl with CAH.
If Dr. New and her colleagues were secretly trying to eliminate gays, they'd vehemently oppose dex. Dex could theoretically put 4 boys "at risk" of gayness for every girl who might get a slight push towards heterosexuality. The more sensible explanation is that they don't care about sexual orientation. They just want little girls to have separate vaginas and urethras. Is that so terrible?
Sexism and homophobia are endemic, so some doctors will come to work with ulterior motives. There are sexist psychiatrists who hope to use antidepressants to shoehorn women into marriage and motherhood, but that doesn't make antidepressants a tool of the patriarchy. Even if Dr. New does have old-fashioned ideas about sex and gender roles, that doesn't mean that everyone who prescribes prenatal dex is on board with them.
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.
The debate over prenatal dex is a debate over how to manage potentially serious birth defects. The as-yet unproven effects of these drugs on sexual orientation are a red herring that Dreger and her allies are dangling in front of a scientifically illiterate blogosphere to demonize their opponents.
It is ironic that in their latest post Dreger and her colleagues are using the Endocrine Society's new CAH recommendations as stick to beat Dr. New and other doctors who favor prenatal dex.
The new guidelines say that dex is no longer the standard of care and that more research is needed to screen for potential long-term side effects. The irony is that the task force reconsidered dex because surgical options have improved so much. Dreger and her allies view surgery on children with ambiguous genitalia as a form of sexual mutilation. Whereas, the Endocrine Society guidelines that they now cite so reverently, recommend "early, single-stage surgical repair for severely virilized girls," i.e., the very surgery that Dreger denounces as female genital mutilation.
"Avoiding surgery is the primary rationale for considering prenatal treatment. Surgical techniques and success rates have improved greatly in recent years while the risks of prenatal treatment have not," Endocrine Society task force chair Dr. Phyllis Speiser wrote in the announcement of the new guidelines.
Last week's villain was Dr. Dix Poppas, a distinguished New York surgeon whom Dreger and her colleagues accused of sexual impropriety for using a vibrating device to test nerve function in patients with CAH after purportedly nerve-sparing clitoral reduction surgery. There's nothing unusual about testing patients' sensitivity to vibration. Doctors do vibration tests all the time, all over the body, because some nerves are specialized to detect vibrational energy. The so-called "vibrator" was a standard piece of medical equipment called a biothesiometer--a high tech version of the tuning fork that doctors sometimes carry around in their lab coat pockets. (Hanna Rosin gave a very fair account of the Poppas controversy in Slate. I did some of the background research for the piece.)
Dreger and her colleagues have a clear M.O.: Make a sensational, politically loaded allegation against a prominent physician, publish the screed online, and wait for a credulous blogosphere to retell the story in ever more lurid and sensational terms. "Awful Doc Drugs Pregnant Women to Make Their Babies More Girly," screeched Anna North of Jezebel, which typified the intellectual tone of the ensuing debate. Predictably, commenters on various sites started muttering threats, just like they did after Dreger's broadside against Dr. Poppas.
This digital lynch mob mentality is reminds me of the anti-choicers who whip up online hatred against abortion providers with wild allegations that the doctors are eating fetuses.
**One of the hallmarks of dishonest health writing is bandying about meaningless but scary-sounding jargon. Dreger refers to dex as a "risky Class C steroid" without explaining what Class C means. An FDA pregnancy class rating of C means means that the compound has been shown to cause birth defects in lab animals, but that there are no controlled studies (or no studies at all) to show if it causes defects in humans. Caffeine is FDA Class C, as are most prescription drugs. The FDA says that Class C drugs are okay to be used in pregnancy if the potential benefits outweigh the risks.
Dreger and her colleagues also love to play fast and loose with the term "experimental" to make their targets seem as marginal and unethical as possible. A dirty little secret of modern medicine is that a lot of standard care has evolved in practice without being subjected to rigorous testing. Obviously, more research is better, but doctors can't just sit on their hands while they wait for the definitive double blind study. If a pregnant woman needs anti-epileptics, or antibiotics, or antidepressants, sometimes a doctor has to weigh the risks and hope for the best--with the patient's full informed consent.
Sometimes Dreger uses "experimental" to describe something that's actually a widespread medical practice described in textbooks. It's a convenient rhetorical tool to paint her victim as a lone crank, as opposed to someone practicing a kind of mainstream medicine she doesn't like. In the Poppas case, Dreger described the doctor as "experimenting" on little girls, making it sound like he was an isolated wacko with a scalpel fighting a lonely war against the clitoris. In fact, the kind of surgery he does is the standard medical response to girls with ambiguous genitalia. Maybe it shouldn't be, but that's a discussion that needs to happen openly and honestly, not through character assassination.
[Photo credit: flickr user quinn.anya, licensed under Creative Commons.]