Revising the Bioethics Story: Memory and Story in Precarious Times

The foundation story of bioethics is, as Susan Reverby (2009) argues, one of a trinity of horror stories culminating in what we commonly call the "Tuskegee Syphilis Study." The foundation story emphasizes that medical researchers violated participant autonomy by deceiving them about their medical conditions, the goals of the study, and the treatments they would receive, and by failing to consider the health and best interests of the research participant. While this story reflects some key elements of the Tuskegee study, it is only a selection of all the possible facts that, as a consequence, deflects attention from equally salient and problematic elements of the Public Health Service's unethical study and its context. Those elements not included in the bioethics foundation story represent the types of racial and social inequities that COVID-19 and other contemporary events have thrown into stark relief. If bioethics plans to emphasize translational work around public policy and public engagement understood broadly, then it will need to revise and expand the story it tells about itself and its founding.