Every Saturday The CSPH highlights news or recent research in the field of human sexuality. This week we’re discussing a recently published report in the Journal of Bioethical Inquiry that looks at the usage of a synthetic hormone during prenatal development to prevent the development of medically atypical genitalia and behavior in congenital adrenal hyperplasia (CAH)-affected females.
Most often, the Saturday Sexual Studies series showcases new research findings of risks, demographics, procedures, or understandings of sexuality; however, it is also hugely important to think about what is not being studied, and what is being accepted as fact or standard procedure without question. To this end, Dreger, Feder, and Tamar-Mattis—scholars interested in the field of medical ethics—reviewed the history of the prenatal administration of dexamethasone on infants at risk of an intersex condition called congenital adrenal hyperplasia (CAH), in which XX-karyotype females develop what is medically referred to as “male-typical” genitals and/or brains. By reviewing meta-analyses of previous studies, usage rates, grant applications, and statements and writings by the clinicians largely responsible for this usage of dexamethasone, as well as extensive findings through the Freedom of Information Act, the authors of this report raise a number of alarms about the administration of the hormone. These include: potentially unethical research on human subjects; marketing depicting the drug as “safe for mother and child” without research to verify such claims; and using the hormone to maintain social, sexual, and gender norms, rather than medical health.
The article dedicated much of its critique to the research history of the usage of dexamethasone prenatally, largely looking at the work of Dr. Maria New, the main researcher and advocate for such “treatment.” Her work was criticized by the authors for asserting dubious claims of safety to mother and fetus when, as an off-label drug—meaning the use for which it is being prescribed is not what the FDA approved—it has not been shown to be safe when used in this way. Dexamethasone is commonly administered to pregnant women to prevent miscarriages quite safely; however, several studies have associated the usage of dexamethasone to prevent intersex genitalia to a variety of negative outcomes, including diminished cognitive function and cardiovascular issues to adults who were exposed as a fetus. However, as the researchers pointed out, because Dr. New is not employed by the drug manufacturer, she is not barred from marketing the treatment as safe, without disclaimer. Not only might the drug used in her study be potentially unsafe, but Dreger et al. show that there was no adequate follow-up after the completion of the study to examine long-term health effects, and that it was even uncertain whether subjects were capable of providing informed consent. This latter reason is particularly important for research involving human subjects as it ensures that participants are not potentially subjecting themselves to harm against their will, and by failing to inform participants of the safety risks of dexamethasone, these individuals were not able to make a fully-educated decision. Additionally, the trials and studies she oversaw concerning dexamethasone were of questionable validity, due to the study design utilized, the small sample sizes included, and the lack of reporting any means of preventing enrollment or observational bias.
One crucial point of concern in the dexamethasone research and “treatment” is its purpose and usage. There are many different intersex conditions, yet out of all of these, only CAH is at times considered to be a true medical emergency, as it can result in dangerous salt-wasting in infancy, leading to dehydration and death. However, as prescribed, dexamethasone does not affect whether an infant develops CAH, but only serves to prevent female virilization (the development of masculine traits), a trait which presents no health concerns. Usage of dexamethasone for this purpose only serves to regulate anatomy, to normalize certain sexual or genital features, and prevent development that strays too far from the expected image.
That is the intended purpose of the dexamethasone regimen: regulation of genitlia. The authors of this report, though, show how clinicians have expressed interest in using the drug to reduce “behavioral masculinization,” or behaviors that are more “male-typical,” including tomboyism, a lack of interest in motherhood, lesbianism, bisexuality, and being transgender. Implications of this interest are staggering: not only is medicine being used to police our anatomy from the womb, but it is also striving to regulate social difference and maintain gender norms. For the expectation that so-called masculinity in female-born individuals is pathological, that it would be better had it never existed, serves only to uphold stereotypes and maintain narrow boxes on human activity and expression. To say that being not-straight, trans*, a tomboy, or uninterested in infants or motherhood needs to be fixed perpetuates a culture where such individuals can be viewed as second-class or less legitimate, and allows them to continue to be targets of scorn, derision, and abuse.
Nothing presented in this article is remarkably new information; the usage of dexamethasone to regulate genital development was recorded as early as 1984. Yet that indeed is what makes this report so horrifying: this practice has been going on for some time, yet it has not been named for what it is, which is the attempted control over sexual and gender norms. Dreger, Feder, and Tamar-Mattis themselves were highly wary of what their findings meant, calling prenatal dexamethasone for CAH “the canary in the modern medical mine,” alerting us to further, deeper ethical dangers ahead. This amount of unethical research, unfounded safety claims in marketing, disregard for human subjects, and attempts at regulating gender and social roles is a frightening side of our medical and clinical culture that rarely gets, and must more often be, exposed.
