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From subject to participant: ethics and the evolving role of community in health research.
Am J Public Health. 2015 May; 105(5):900-8.AJ

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.

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Authors+Show Affiliations

Bromley E
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.
Mikesell L
No affiliation info available
Jones F
No affiliation info available
Khodyakov D
No affiliation info available

MeSH

Community-Based Participatory ResearchCooperative BehaviorEthics, ResearchFemaleHealth Services ResearchHumansMaleMental Health ServicesNegotiatingResearch Personnel

Pub Type(s)

Journal Article
Research Support, N.I.H., Extramural

Language

eng

PubMed ID

25790380

Citation

Bromley, Elizabeth, et al. "From Subject to Participant: Ethics and the Evolving Role of Community in Health Research." American Journal of Public Health, vol. 105, no. 5, 2015, pp. 900-8.
Bromley E, Mikesell L, Jones F, et al. From subject to participant: ethics and the evolving role of community in health research. Am J Public Health. 2015;105(5):900-8.
Bromley, E., Mikesell, L., Jones, F., & Khodyakov, D. (2015). From subject to participant: ethics and the evolving role of community in health research. American Journal of Public Health, 105(5), 900-8. https://doi.org/10.2105/AJPH.2014.302403
Bromley E, et al. From Subject to Participant: Ethics and the Evolving Role of Community in Health Research. Am J Public Health. 2015;105(5):900-8. PubMed PMID: 25790380.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - From subject to participant: ethics and the evolving role of community in health research. AU - Bromley,Elizabeth, AU - Mikesell,Lisa, AU - Jones,Felica, AU - Khodyakov,Dmitry, Y1 - 2015/03/19/ PY - 2015/3/20/entrez PY - 2015/3/20/pubmed PY - 2015/6/16/medline SP - 900 EP - 8 JF - American journal of public health JO - Am J Public Health VL - 105 IS - 5 N2 - 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. SN - 1541-0048 UR - https://www.unboundmedicine.com/medline/citation/25790380/From_subject_to_participant:_ethics_and_the_evolving_role_of_community_in_health_research_ DB - PRIME DP - Unbound Medicine ER -