Alice Dreger

The OHRP and SUPPORT - Another view

A group of physicians, bioethicists, and scholars in allied fields agrees with the Office for Human Research Protections about the informed-consent documents in SUPPORT.

The Controversy Surrounding The Man Who Would Be Queen: A Case History of the Politics of Science, Identity, and Sex in the Internet Age

In 2003, psychology professor and sex researcher J. Michael Bailey published a book entitled The Man Who Would Be Queen: The Science of Gender-Bending and Transsexualism. The book’s portrayal of male-to-female (MTF) transsexualism, based on a theory developed by sexologist Ray Blanchard, outraged some transgender activists. They believed the book to be typical of much of the biomedical literature on transsexuality—oppressive in both tone and claims, insulting to their senses of self, and damaging to their public identities. Some saw the book as especially dangerous because it claimed to be based on rigorous science, was published by an imprint of the National Academy of Sciences, and argued that MTF sex changes are motivated primarily by erotic interests and not by the problem of having the gender identity common to one sex in the body of the other. Dissatisfied with the option of merely criticizing the book, a small number of transwomen (particularly Lynn Conway, Andrea James, and Deirdre McCloskey) worked to try to ruin Bailey. Using published and unpublished sources as well as original interviews, this essay traces the history of the backlash against Bailey and his book. It also provides a thorough exegesis of the book’s treatment of transsexuality and includes a comprehensive investigation of the merit of the charges made against Bailey that he had behaved unethically, immorally, and illegally in the production of his book. The essay closes with an epilogue that explores what has happened since 2003 to the central ideas and major players in the controversy.

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Following extensive examination of published and unpublished materials, we provide a history of the use of dexamethasone in pregnant women at risk of carrying a female fetus affected by congenital adrenal hyperplasia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

Darkness’s Descent on the American Anthropological Association

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.

More Rhetoric Than Argument

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

Brave New World? Enhancement and Rehabilitation Medicine

K S A k D Therapy” . . . is the use of biotechnical power to treat individuals with known diseases, isabilities, or impairments, in an attempt to restore them to a normal state of health and tness. “Enhancement,” by contrast, is the directed use of biotechnical power to alter, by irect intervention, not disease processes but the “normal” workings of the human body and syche, to augment or improve their native capacities and performances [1]. In this issue of PM&R, we have a point-counterpoint debate that raises the question of ow physiatrists should respond to requests for enhancement interventions (in this case, erformance-enhancing drugs for augmenting athletic performance; see pages 285-293 2]). This issue is not unique to physiatrists, and indeed is being raised in a number of ontexts as advances in biotechnology create new options for not only treating diseases, but lso for improving species-typical functioning. In a recent issue of the journal Neurology, for xample, the American Academy of Neurology’s Ethics, Law and Humanities Committee ublished guidelines to assist practicing neurologists faced with requests from patients who ave no diagnosable medical or mental disorder, but desire to use prescription drugs to nhance their memory or executive function [3]. Fundamentally, the issue of enhancement therapies raises questions about the profession f medicine. No one questions that physicians treat disease and disability, or even work to revent such future states. But should physicians also then use their medical skills and tools o enhance human functioning to “superhuman” levels? And, if so, under what conditions? f we do accept that enhancement therapy is part of our social role as physicians, what are he implications for our concepts of patient autonomy, and the need to balance benefits and isks of such treatments? And finally, what are the implications for PM&R as a profession? To help us approach these issues, I have invited 3 expert commentators to help us elineate the ethics issues involved in enhancement interventions. Thomas H. Murray, PhD, s President and CEO of The Hastings Center as well as coeditor of the recently released book n Performance-Enhancing Technologies in Sports: Ethical, Conceptual, and Scientific Issues Johns Hopkins University Press). He provides an ethics commentary specifically to the oint-counterpoint debate of Chimes and Finnoff (See pages 285-293 [2]). I have asked 2 dditional experts to help us think about the issue of enhancement and rehabilitation more roadly. Medical historian and ethicist, Alice Dreger, PhD, is Professor of Clinical Medical umanities and Bioethics, Northwestern University Feinberg School of Medicine, and regor Wolbring, PhD, is a Disability Studies Scholar and faculty member in the Departent of Community Health Sciences, Program of Community Rehabilitation and Disability tudies, Calgary, Alberta, Canada. As always, we invite you to write in with your comments nd responses.

The difference between science and technology in birth.

Obstetrics seems to be particularly resistant to making evidence-based changes to common practice, perhaps because of the emotional climate surrounding pregnant women and babies.

From Principles to Process in Disorders of Sex Development Care

the DSD consensus [2] – that makes possible such good decision-making remains elusive. Further, providers caring for patients with these rare conditions, at least in North America, are not contributing to patient registries that collect the evidence needed for meaningful informed consent. They do not engage qualified psychosocial clinical professionals who can help families manage the ongoing challenges of life outside the hospital. They do not have systems in which parents’ distress, confusion, and need for extensive education are addressed, slowly and deliberately and repetitively enough to achieve true shared decision-making regarding surgeries, hormone treatments, and follow-up care. The authors have opted to ignore the existing DSD ethics literature in an effort to arrive at principles putatively unburdened by previous ethical engagement. They used a dialogue between an ethicist and two clinicians to articulate their proposed principles. We find this strange; it is hard to imagine a surgery article that explicitly ignores the surgical literature. And yet the authors unwittingly suggest a model of how parents might be similarly engaged, slowly and deliberately, in dialogue with a dedicated DSD team member – perhaps a specialized psychologist, genetic counselor, or DSD-knowledgeable clinical ethicist – to arrive organically at a similar understanding of what really matters: the long-term well-being In the article ‘Ethical principles for the management of infants with disorders of sex development’, Gillam, Hewitt, and Warne articulate six principles for the care of children with disorders of sex development (DSD) [1] . These principles strike us as good and reasonable, and indeed those with which many clinicians are already concerned, as is evident from the 2006 consensus of the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology [2] . Indeed, these are essentially the principles on which ethicists and patient advocates have been insisting for years [3, 4] . This article seems largely to be responding to the major DSD debate of a decade ago, namely over genital surgeries in infancy. Many have now recognized that the central challenge in DSD care is not centered on the surgeries per se, but rather finding a way to help families (and healthcare professionals) overcome the shame and anxious secrecy that may shape minds and force hands in ways that ultimately harm all involved. The challenge now is not articulation of principles; the challenge is creating a process for implementation. The authors appear to assume ‘that conditions for good ethical decision-making [...] are already in place’. And yet the environment for shared decision making [5] – the highly integrated, interdisciplinary healthcare team that includes behavioral health services called for in Received: May 31, 2010 Accepted: June 8, 2010 Published online: December 15, 2010 HORMONE RESEARCH IN PÆDIATRICS