Following extensive examination of published and unpublished materials, we provide a history of the use of dexamethasone in pregnant women at risk of carrying a female fetus affected by congenital adrenal hyperplasia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. (shrink)

In September 2000, the self-styled “anthropological journalist” Patrick Tierney began to make public his work claiming that the Yanomamö people of South America had been actively—indeed brutally—harmed by the sociobiological anthropologist Napoleon Chagnon and the geneticist-physician James Neel. Following a florid summary of Tierney’s claims by the anthropologists Terence Turner and Leslie Sponsel, the American Anthropological Association (AAA) saw fit to take Tierney’s claims seriously by conducting a major investigation into the matter. This paper focuses on the AAA’s problematic actions (...) in this case but also provides previously unpublished information on Tierney’s falsehoods. The work presented is based on a year of research by a historian of medicine and science. The author intends the work to function as a cautionary tale to scholarly associations, which have the challenging duty of protecting scholarship and scholars from baseless and sensationalistic charges in the era of the Internet and twenty-four-hour news cycles. (shrink)

An investigation of some of the most contentious debates of our time, Galileo's Middle Finger describes Alice Dreger's experiences on the front lines of scientific controversy, where for two decades she has worked as an advocate for victims of unethical research while also defending the right of scientists to pursue challenging research into human identities. Dreger's own attempts to reconcile academic freedom with the pursuit of justice grew out of her research into the treatment of people born intersex (formerly called (...) hermaphrodites). The shocking history of surgical mutilation and ethical abuses conducted in the name of "normalizing" intersex children moved her to become a patient rights' activist. By bringing evidence to physicians and the public, she helped change the medical system. But even as she worked to correct these injustices, Dreger began to witness how some fellow liberal activists, motivated by identity politics, were employing lies and personal attacks to silence scientists whose data revealed inconvenient truths. Troubled, she traveled around the country digging up sources and interviewing the targets of these politically motivated campaigns. Among the subjects she covers in the book are the anthropologist Napoleon Chagnon, falsely accused in a bestselling book of committing genocide against a South American tribe; the psychologist Michael Bailey, accused of abusing transgender women; and the evolutionary biologist E. O. Wilson, accused of fomenting rightwing ideas about human nature. Galileo's Middle Finger describes Dreger's long and harrowing journey back and forth between the two camps for which she felt equal empathy: social justice warriors and researchers determined to put truth before politics. (shrink)

A collection of first-person case studies that detail serious ethical problems in medical practice and research.

I was invited to join the Seattle Growth Attenuation and Ethics Working Group—collective author of the lead article in this issue of the Report—but I begged off, claiming I had too many other things on my plate. True, but the bigger reason for avoiding the project was my suspicion that I would be torn asunder by the complexity of growth attenuation for persons with disabilities. Reading the essays from the group reveals that instinct to have been dead-on. As a person (...) who has long advocated on behalf of people actively made disabled by charitable pediatric attempts to make them more normal, I breathed a sigh of relief when reading the group’s recommendation that growth attenuation be registered and .. (shrink)

One of two commentaries on “Normalizing Atypical Genitalia: How a Heated Debate Went Astray,” by Josephine Johnston, from the November‐December 2012 issue.