Abstract:
Bioethicists frequently call for empirical researchers to engage participants and community members in their research, but don’t themselves typically engage community members in their normative research. In this article, we describe an effort to include members of the public in normative discussions about the risks, potential benefits, and ethical responsibilities of social and behavioral genomics (SBG) research. We reflect on what might—and might not— be gained from engaging the public in normative scholarship and on lessons learned about public perspectives on the risks and potential benefits of SBG research and the responsible conduct and communication of such research. We also provide procedural lessons for others in bioethics who are interested in engaging members of the public in their research.
, , , , , , and , “ Wrestling with Public Input on an Ethical Analysis of Scientific Research,” in The Ethical Implications of Social and Behavioral Genomics, ed. Erik Parens and Michelle N. Meyer, special report, Hastings Center Report 53, no. 2 (2023): S50– S65. DOI: 10.1002/hast.1478