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Report

Wrestling with Public Input on an Ethical Analysis of Scientific Research

Authors:

  • Daphne Oluwaseun Martschenko, Stanford University
  • Shawneequa L. Callier, George Washington University
  • Nanibaa’ A. Garrison, University of California, Los Angeles
  • Sandra Soo‐Jin Lee, Columbia University
  • Patrick Turley, Harvard University
  • Michelle Meyer, Geisinger Health Systems
  • Erik Parens , Hastings Center
Publication Date:

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.