A new paper by Alice Dreger, a researcher and medical humanities and bioethics professor at Northwestern University's Feinberg School of Medicine, targets that controversy and exposes what she regards as the questionable ethics that have allowed a generation of pregnant woman to serve as virtual guinea pigs for fetal engineering.
The paper, published in the journal Bioethical Inquiry, indicts Dr. Maria I. New, the most prodigious promoter of prenatal dexamethasone for CAH [congenital adrenal hyperplasia]. It also criticizes the institutions where New has worked and the federal government, for "de facto experimentation on fetuses and pregnant women, largely outside of prospective long-term trials and without adequate informed consent."
Dreger charges that the government failed to collect and publish evidence about use of dexamethasone and that public funds were used for research to "prevent benign behavioral sex variations, including tomboyism and lesbianism."
At issue is the treatment for CAH, an adrenal disorder that causes an overproduction of male hormones. CAH can occur in several forms, but "classic" CAH affects roughly 1 in 16,000 births in the United States. It occurs when two parents each carries a certain genetic mutation. Typically, they're unaware they're carriers until a child is born with the disorder.
The condition affects both boys and girls. In boys, it can result in larger penises, short stature and, later in life, cardiovascular and blood pressure problems.
In girls, like [26-year-old Jenny] Westpahl's daughter, the male hormones can cause ambiguous genitals. That may sound like mainly a cosmetic issue, but girls with CAH can have frequent urinary tract infections. They may be unable to have sexual intercourse, or they may find it extremely painful. Even if they are fertile, they may not be able to bear children.
Image: Pregnant woman with medication, via Shutterstock.