학술논문

Wrestling with Public Input on an Ethical Analysis of Scientific Research.
Document Type
Article
Source
Hastings Center Report. Mar2023 Supplement 1, Vol. 53, pS50-S65. 16p. 3 Charts.
Subject
*PATIENT participation
*HEALTH services administration
*MOTIVATION (Psychology)
*COMMUNITY health services
*VIDEOCONFERENCING
*RESEARCH ethics
*ORGANIZATIONAL goals
*GENOMICS
*RESEARCH funding
*MEDICAL research
*PUBLIC opinion
*BIOETHICS
Language
ISSN
0093-0334
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. [ABSTRACT FROM AUTHOR]