title: From subject to participant: ethics and the evolving role of community in health research.
abstract: Belmont Report principles focus on the well-being of the research subject, yet community-engaged investigators often eschew the role of subject for that of participant. We conducted semistructured interviews with 29 community and academic investigators working on 10 community-engaged studies. Interviews elicited perspectives on ethical priorities and ethical challenges. Interviewees drew on the Belmont Report to describe 4 key principles of ethical community-engaged research (embodying ethical action, respecting participants, generalizing beneficence, and negotiating justice). However, novel aspects of the participant role were the source of most ethical challenges. We theorize that the shift in ethical focus from subject to participant will pose new ethical dilemmas for community-engaged investigators and for other constituents interested in increasing community involvement in health research.
authors: Elizabeth Bromley is with the Semel Institute Center for Health Services and Society, Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles and the VA Mental Illness Research, Education and Clinical Center, Greater Los Angeles VA Healthcare System, Los Angeles, CA. Lisa Mikesell is with the Communication Department, School of Communication and Information and the Institute of Health, Health Care Policy, and Aging Research, Rutgers University, New Brunswick, NJ. Felica Jones is with Healthy African American Families II, Los Angeles, CA. Dmitry Khodyakov is with the RAND Corporation, Santa Monica, CA.
authors: Elizabeth
authors: E
authors: Bromley
authors: Lisa
authors: L
authors: Mikesell
authors: Felica
authors: F
authors: Jones
authors: Dmitry
authors: D
authors: Khodyakov
mesh_terms: D055812:Community-Based Participatory Research / Q000941:ethics*; D003299:Cooperative Behavior; D032984:Ethics, Research; D005260:Female; D006302:Health Services Research / Q000941:ethics*; D006801:Humans; D008297:Male; D008605:Mental Health Services / Q000458:organization & administration; D017008:Negotiating; D012108:Research Personnel / Q000941:ethics*