Beyond Good Intentions.

Ethical questions in medicine tend to emphasize the intentions of researchers and physicians. Questions concerning harm have more often been addressed in terms of legal culpability. This commentary proposes that normalizing interventions for atypical sex anatomies, both historical and ongoing, be recognized as a kind of medical error, and that attention be focused not simply on prevention, but on repair.

Prenatal Dexamethasone for Congenital Adrenal Hyperplasia: An Ethics Canary in the Modern Medical Mine.

Following extensive examination of published and unpublished materials, we provide a history of the use of dexamethasone in pregnant women at risk of carrying a female fetus affected by congenital adrenal hyperplasia (CAH). This intervention has been aimed at preventing development of ambiguous genitalia, the urogenital sinus, tomboyism, and lesbianism. We map out ethical problems in this history, including: misleading promotion to physicians and CAH-affected families; de facto experimentation without the necessary protections of approved research; troubling parallels to the history of prenatal use of diethylstilbestrol (DES); and the use of medicine and public monies to attempt prevention of benign behavioral sex variations. Critical attention is directed at recent investigations by the U.S. Food and Drug Administration (FDA) and Office of Human Research Protections (OHRP); we argue that the weak and unsupported conclusions of these investigations indicate major gaps in the systems meant to protect subjects of high-risk medical research.

Normalizing medicine: between "intersexuals" and individuals with "Disorders of Sex Development".

In this paper, I apply Michel Foucault's analysis of normalization to the 2006 announcement by the US and European Endocrinological Societies that variations on the term "hermaphrodite" and "intersex" would be replaced by the term, "Disorders of Sex Development" or DSD. I argue that the change should be understood as normalizing in a positive sense; rather than fighting for the demedicalization of conditions that have significant consequences for individuals' health, this change can promote the transformation of the conceptualization of intersex conditions from "disorders like no other" to "disorders like many others." Understood in these terms, I conclude, medical attention to those with atypical anatomies should be recast from a preoccupation with "normal appearance" to the concern with human flourishing that is the proper object of medical attention.