As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. (...) Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates. (shrink)

Lee emphasizes the need to better understand the moral relationship between researchers and participants connoted by precision medicine, with the framework of “the gift” offering bioethics a...

ABSTRACT: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. (shrink)