In 2010, we first heard of the use of dexamethazone for "sex normalization" - de-masculinization - for fetuses at risk of an intersex condition. Now, some scientist ethicists have come out with a paper discussing the ethics of the use of this drug.
"The pregnant women targeted are at risk for having a child born with the condition congenital adrenal hyperplasia (CAH), an endocrinological condition that can result in female fetuses being born with intersex or more male-typical genitals and brains. Women genetically identified as being at risk are given dexamethasone, a synthetic steroid, off-label starting as early as week five of the first trimester to try to "normalize" the development of those fetuses, which are female and CAH-affected. Because the drug must be administered before doctors can know if the fetus is female or CAH-affected, only one in eight of those exposed are the target type of fetus.
The off-label intervention does not prevent CAH; it aims only at sex normalization."
According to Lili Velez, a freelance medical writer and former professor of biomedical writing:
Needless to say, I would bet the people administering these treatments have a rather narrow idea of what "normal" is for human beings.
Pregnancy is a time when joy can turn to panic in the blink of an eye, and wanting a "normal, healthy baby" can leave families with difficult choices. We don't, scientifically or culturally, really understand the full range of "normal" for humans. It's been a challenge for families raising children with intellectual, metabolic, or physical differences to make a safe pathway for their lives. The same dignity about difference needs to be provided for CAH-affected children and their parents.
The American Academy for the Advancement of Science characterized this as a "dangerous experiment in fetal engineering."
The paper, published in the Journal of Bioethical Inquiry, is authored by Alice Dreger, professor of clinical medical humanities and bioethics at Northwestern University Feinberg School of Medicine, who has written extensively on intersex ethics, and is co-authored by Ellen Feder, associate professor of philosophy and religion at American University, and Anne Tamar-Mattis, executive director of Advocates for Informed Choice.
There are a number of problems with the treatment. Because the drug must be administered before doctors can know if the fetus is female or CAH-affected, only one in eight of those exposed are the target type of fetus. Furthermore, the off-label intervention does not prevent CAH; it aims only at de-masculinization. It is a steroid like Diethylstilbestrol (DES), which caused major fertility problems and fatal cancers among the daughters of those given DES. Experts estimate the glucocorticoid dose reaching the fetus is 60 to 100 times what the body would normally experience.
For more than 10 years, medical societies repeatedly but ultimately impotently expressed high alarm at use of this off-label intervention outside prospective clinical trials, because it is so high risk and because nearly 90 percent of those exposed cannot benefit. Mothers offered the intervention have been told it "has been found safe for mother and child." This is untrue. The FDA said it can't stop this lie because it's done by clinicians, rather than the drug maker. A report from Sweden in the Journal of Clinical Endocrinology and Metabolism documents a nearly 20 percent "serious adverse event" rate among the exposed children.
I have always found it hard to understand that Western societies feel free to experiment on our intersex babies with strange drugs and painful, scarring surgeries, calling it medicine, but condemn African cultures that circumcise female children, calling it child abuse. I do not condone female circumcision. I also do not condone the harm we do in the name of science when we should know better. First, do no harm.
The paper is available for free downloadhere.
(Pregnant belly graphic via Bigstock)