Why Bioethics Has a Race Problem.

March-April 2016 In the September-October 2001 issue of the Hastings Center Report, editor Gregory Kaebnick encouraged bioethicists to turn their attention toward “easily overlooked, relatively little-talked-about societal topics” such as race. He noted that that issue of the Report included essays on transracial adoption and the Tuskegee Syphilis Study (1932-1972). In 2000 the president of the American Society for Bioethics had called for a more socially conscious bioethics. Race was risky territory, Kaebnick pointed out, but this challenge did not justify avoidance. His brief editorial does not address why bioethicists had found the race issue so easy to overlook in the first place. Over the next fifteen years, the response to this editor’s invitation to examine the racial dimensions of medicine in the Report was limited both in quantity and in terms of the range of topics covered. This period produced two commentaries on sickle cell anemia (SCA), a commentary and two other short pieces on Tuskegee, two commentaries on health care and racism, a commentary on the problematic representation in The Immortal Life of Henrietta Lacks of African Americans and their relationships to medicine and bioethics, a commentary on “ethnic drugs,” and an article on the racial aspect of treating neurosyphilis during the period from 1922 to 1953. (My strategy for locating these and for searching the other ethics and medical humanities journals mentioned below was informal but methodical: I examined the contents of each issue over the fifteen-year period, looking for pieces that I deemed were focused primarily on matters pertaining to African Americans and medicine or simply to race generally. This method leaves out pieces on other socially marginalized racial and ethnic minorities, however.) Only one of these pieces addressed race and medicine in a broad sense. SCA is essentially a technical topic, and further analyses of the Tuskegee scandal consign medical racism, inadvertently but consequentially, to the past. Similarly, the treatment of neurosyphilis over sixty years ago is an historical topic that does not address the ethical dimensions of race relations in medicine as it is practiced today. All told, the bioethics community has not responded to the editor’s call for bioethicists to engage with the racial dimension of medicine, and the Report has not really come through on the tacit commitment made in 2001. Over at the American Journal of Bioethics, the past fifteen years have produced only four articles or essays focused primarily and in a broad sense on race and medicine. Catherine Myser’s article “Differences from Somewhere: The Normativity of Whiteness in Bioethics in the United States” (2003) argued that “we have inadequately noticed and questioned the dominance and normativity of whiteness in the cultural construction of bioethics in the United States.” Her critique produced several short responses in AJOB and a longer response from Myser. All of these publications appeared in 2003. (In 2013, Myser copublished “Bioethics and Its Gatekeepers: Does Institutional Racism Exist in Leading Bioethics Journals?”) The other essay in AJOB from this period that centers on race and bioethics is “Why Bioethics Cannot Figure Out What to Do with Race” (2007), by Olivette Burton (an African American social worker with a background in medical ethics and social policy who is a former executive managing editor of AJOB). “[B]ioethics,” Burton writes, “cannot figure out what to do with race until it understands the historical, cultural and religious basis for current race relations” (p. 7). The U.S. Public Health Service’s Tuskegee Syphilis Experiment, she says, has given black people “good reason to question bioethics about its commitment to the Black community” (p. 10). (At the same time, I have argued, “Fascination with ‘Tuskegee’ has truncated our awareness of the history, depth, and systemic character Why Bioethics Has a Race Problem