by Alice Dreger
Dr. Mark Sloan, a pediatrician based in northern California, has written a very helpful overview of a controversial fetal engineering intervention: prenatal dexamethasone for pregnant women considered at risk of giving birth to a daughter with congenital adrenal hyperplasia (CAH).
Although CAH is relatively rare, the use of this prenatal intervention should interest and concern all women’s health advocates for two reasons:
- This fetal intervention has been pushed through the use of highly problematic sexist and heterosexist stereotypes.
- The unscientific and unethical ways in which the intervention has been deployed send up all sorts of red flags with regard to patient safety and patients’ rights to informed consent.
CAH is a serious inborn endocrine disease; newborns are screened for it, and people who have it usually require lifelong hormonal management. One “side effect” of CAH is atypical (different from average) sex development in some females.
In an effort to prevent that atypical sex development, some doctors have offered prenatal dexamethasone, a synthetic steroid, to pregnant women identified through genetic analysis as being at risk of having a child with CAH. Giving a pregnant woman dexamethasone cannot prevent CAH or cure her offspring of CAH. The intervention is offered only in an attempt to ensure typical sex development in the offspring who are genetic females.
A genetic female fetus with CAH may develop differently from average females because CAH can result in high levels of masculinizing hormones. The process is called virilization, because it leaves a female skewed more toward the middle or even the male end of the genital development spectrum. (For an animated primer on genital development, click here.)
A female with CAH may be born with a large clitoris, even one that looks something like a penis; her labia may be joined like a scrotum; and her vagina and urethra in some cases will form joined together, which can put her at increased risk for infection and, at sexual maturity, difficulties with intercourse and giving birth.
Although in theory ensuring typical genital development may sound reasonable, in practice, this off-label use of dexamethasone has been a high-risk game. For the drug to work, doctors must give it starting by about week 7 of fetal life, before the genitals sexually differentiate. At this early stage, doctors cannot know if the woman is carrying a male or female fetus or whether the fetus even has CAH.
Only about 10 percent of the fetuses exposed will actually turn out to be females with CAH, meaning about 90 percent of those exposed will bear all the risk of fetal biochemical engineering with no chance to benefit.
As Dr. Sloan explains, the CAH-affected population of girls and women also shows signs of having their brains “virilized” during development. They are more likely than non-CAH girls to be tomboyish, and more likely to grow up to be lesbian, bisexual, or to identify as male in terms of their gender. (This population contributes to the idea that gender identity and sexual orientation have a biological component.)
I find it disturbing that the chief clinical-researcher proponent of the intervention has indicated that she’s interested in seeing if the intervention can “successfully” prevent this “behavioral masculinization” — in other words, she’s interested in seeing whether the fetal intervention can lower the rates of tomboyism, lesbianism, and bisexuality in this population.
As University of Michigan pediatric psychologist David Sandberg told Time magazine, “Maybe this gives clinicians the idea that the treatment goal is normalizing behavior. To say you want a girl to be less masculine is not a reasonable goal of clinical care.” (I agree.)
Most troublingly, as Dr. Sloan notes in his article, there has been shockingly little study of what this intervention does to the exposed children’s health.
After nearly 30 years of use, we have stunningly little data on efficacy and safety on this off-label use. It appears that, in many cases, women have been offered this drug without the protections of being enrolled in formal studies, after being lured into the intervention with claims that it “has been found safe for mother and child.”
Dr. Sloan discusses a paper I recently authored on this matter with my colleagues Ellen Feder, PhD, of American University, and Anne Tamar-Mattis, JD, of Advocates for Informed Choice. I encourage you to read Dr. Sloan’s article, and then, if you want to learn more about how this history unfolded, read our article, which is available for free download.
I also encourage you to read the “Dex Diaries” series I have mounted at fetaldex.org. There you’ll find a series of short essays unpacking this story from a personal point of view.
Kiira Triea (who recently died of cancer) wrote there about her own experience of having been changed in the womb; Fran Howell has relayed about how hard it is to watch this after herself being exposed to DES in the womb; Ellen Feder has expressed sympathy for the poorly informed mothers; Aron Sousa has analyzed the game that has apparently been played here with regard to federal funding; and Anne Tamar-Mattis has reported on the real silent majority of doctors who are troubled by how this population has historically been treated.
Finally, I encourage you to watch the videos at The Interface Project, where real people born with uncommon forms of sex development explain why no body is shameful.
Alice Dreger is Professor of Clinical Medical Humanities and Bioethics at Northwestern University’s Feinberg School of Medicine. Her personal website is alicedreger.com, and you can follow her on Twitter @AliceDreger.