From Subject to Participant: Ethics and the Evolving Role of Community in Health Research

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. Interv...

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Bibliographic Details
Published inAmerican journal of public health (1971) Vol. 105; no. 5; pp. 900 - 908
Main Authors Bromley, Elizabeth, Mikesell, Lisa, Jones, Felica, Khodyakov, Dmitry
Format Journal Article
LanguageEnglish
Published United States American Public Health Association 01.05.2015
Subjects
Community
Community Health
Community involvement
Community-Based Participatory Research - ethics
Cooperative Behavior
Ethics
Ethics, Research
Female
Framing Health Matters
Health services
Health Services Research - ethics
Humans
Interviews
Male
Medical ethics
Medical research
Mental health
Mental Health Services - organization & administration
Negotiating
Principles
Public health
Public Health Practice
Public Health Workers
Research ethics
Research Personnel - ethics
Statistics/Evaluation/Research
Studies
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Summary: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.
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E. Bromley supervised thematic analyses. E. Bromley and D. Khodyakov conceptualized the study, conducted content coding, and cowrote the article. L. Mikesell conducted content coding and thematic analyses. F. Jones revised interview guides and reviewed thematic analyses. D. Khodyakov supervised content coding. All authors contributed to the overall design of the study, drafting of interview guides, collection of interview data, review of other authors’ analyses, and article revision.
Peer Reviewed
Contributors
ISSN:0090-0036
1541-0048
DOI:10.2105/AJPH.2014.302403