Questioning an Intersex Intervention
Sometimes the heart of a research paper can be found in its subtitle.
So it is in a paper recently published by the journal Bioethical Inquiry and coauthored by Ellen Feder, who teaches in the College’s Department of Philosophy and Religion. The paper, “Prenatal Dexamethasone for Congenital Adrenal Hyperplasia: An Ethics Canary in the Modern Medical Mine,” examines the often questionable early pregnancy use of dexamethasone for female fetuses that could develop congenital adrenal hyperplasia (CAH).
CAH, a malfunction of the adrenal glands, can occur in girls and boys. In girls, it can be characterized by the development of ambiguous genitalia, meaning a large clitoris, fused labia that appear to form a scrotum, or a blocked or absent lower vagina. It also can alter the brain—in effect making it seem more masculine—and may lead to such behavior as tomboyism or lesbianism. Preventing such behavior, the desired outcome of some studies involving dexamethasone and CAH, the authors note, is well outside the bounds of legitimate medical research.
Administering dexamethasone is also intended to prevent uro-genital sinus, a joining of the urethra and vagina. Treatment of the condition usually means surgery to prevent problems with infection and later in life with sexual intercourse.
Feder, Alice Dreger of Northwestern University, and Anne Tamar-Mattis of Advocates for Informed Choice delved into extensive published and unpublished materials, using Freedom of Information Act requests, related to the use of dexamethasone in pregnant women deemed at risk of having a girl with CAH.
What they found called into question the continued funding of studies involving the drug for prenatal use for CAH. Not only are women given the drug sometimes not informed that its use for CAH is experimental, but the methodology of the vast majority of studies involving it is sloppy at best. Yet dexamethasone’s prenatal use for CAH is still widely studied. Only Sweden specifically restricts such research.
Here’s how Feder and her coauthors spell out their objections, based on their review of research:
“In the United States, the use of dexamethasone remains 'off-label.' This means that the indication has never received approval by the Food and Drug Administration (FDA). Nonetheless, we want to be clear: The problem we see with the use of prenatal dexamethasone for CAH is not per se that it is an off-label use; it is rather that—as this paper documents—prenatal dexamethasone for CAH has sometimes been promoted to prospective patients and clinicians in misleading ways, and sometimes promoted for uses that are not legitimately medical (e.g., for the prevention of tomboyism and lesbianism). Furthermore, this intervention—intended to alter the course of fetal development—has been ‘studied’ in ways so slipshod as to breach professional standards of medical ethics.”
Feder and her coauthors also take to task one of the main researchers behind prenatal dexamethasone use for CAH in the United States, Dr. Maria New, formerly at Cornell’s medical center and now at Mount Sinai Hospital. The National Institutes of Health (NIH) in 1996, for example, funded a grant application by New “to see whether prenatal dexamethasone ‘works’ to make more CAH-affected girls straight and interested in having babies,” Feder and her coauthors report.
That NIH funded a study to see whether a drug could help prevent lesbianism and promote an interest in motherhood is one of the more surprising results of their study, Feder says.
Which brings us back to that subtitle.
“I fear that one of the reasons that it has not been taken so seriously as an ethical problem is because it seems to affect relatively few people,” Feder says. “But the other reason I think it might not be getting the attention it deserves is that this notion of atypical sex so unsettles people that they don’t want to deal with it. And it points to greater problems in medical practice and points to graver ethical violations that may be occurring.”