by: Cassandra Warren
I recently read a short article summarizing the findings from a paper in the Journal of Bioethical Inquiry: An Interdisciplinary Forum for Ethical and Legal Debate, which presented the history of treating pregnant women who are at risk of carrying a female fetus affected by congenital adrenal hyperplasia (CAH) with a medicine called dexamethasone. The treatment is given in an attempt to, “prevent CAH-affected female fetuses from developing in a sexually atypical fashion, some physicians treat pregnant women ‘at risk’ for having an affected daughter with the steroid dexamethasone.”
In short, the article discusses how medical providers are giving dangerous medication (steroid dexamethasone) to pregnant women under the guise that it’s safe. What I’m thinking: how come the news article I read covering the paper makes no mention to the ethical and legal issues around trying to reduce rates of what the scientists termed “behavioral masculinization”?
In the published paper, CAH is described as “a disease of the endocrine system that can cause virilization (i.e., development of masculine traits) in female fetuses.” CAH shouldn’t be categorized as a disease: it does not harm the body, lead to illness or injury. However, I did find that the authors made note of the ethical issues concerning treatment for “behavioral masculinization”, saying, “There are a number of other ethical problems in the history of this intervention also deserving of attention, including… use of medicine and public monies for research to prevent benign behavioral sex variations.”
The steroid was created because they (who the hell are they?) want to reduce rates of tomboyism, lesbianism, and bisexuality. I’m wondering again: How much money went into this research? Was it my tax paying dollars? Did the proposal for funding for this “treatment” say something like: we’re creating a better race of people by eliminating rates of masculinized female fetuses?! How do people not instantly realize this as a gendercide! I’m at a loss/outrage/completely stunned at how little of in issue it is to “treat” possible masculinized female fetuses. How about how medical providers were not educated enough to understand that the very idea of this experiment violates basic human rights and threatens the lives of not only the mother and child in this experiment but of every life that claims a gender non-conforming body/identity?
The risks around people born with CAH (or any other form of intersex) lie in the stigma around gender non-conforming bodies and identities. This scientific experiment not only reinforces the stigma (and asks that women put their bodies and children at risk for gender normalization), it contributes to the creation of knowledge around gender that associates anything lying outside of the traditional gender model (i.e., feminine female bodied persons and masculine male bodies persons) as wrong, abnormal, and apparently diseased. Everyday people who lay outside of the traditional gender model are ostracized, murdered, criminalized, homeless, raped, bullied, and at a higher risk for self harm. This practice should be considered unethical and illegal not only because it harms the mother/child or because it tries to prevent benign sex variation, but because it is a direct action to perpetuate the violence, hatred, and discrimination of anyone seeming to lay outside of the gender binary.
For more information on CAH or the intersex community, check out the Intersex Society of North America. You can also read “Sexing the Body” by Anne Fausto-Sterling, an academic and activist who has written extensively on the topic. And, for a Chicago shout-out: check out Intersex Chicago, a group for intersex persons and allies. You can contact and find more information at www.meetup.com/Intersex.Chicago/