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From subject to participant: Ethics and the evolving role of community in health research

Author

Listed:
  • Bromley, E.
  • Mikesell, L.
  • Jones, F.
  • Khodyakov, D.

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.

Suggested Citation

  • 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, American Public Health Association, vol. 105(5), pages 900-908.
    • Handle: RePEc:aph:ajpbhl:10.2105/ajph.2014.302403_8
    DOI: 10.2105/AJPH.2014.302403
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    Cited by:

    1. Julie A. Beans & Bobby Saunkeah & R. Brian Woodbury & Terry S. Ketchum & Paul G. Spicer & Vanessa Y. Hiratsuka, 2019. "Community Protections in American Indian and Alaska Native Participatory Research—A Scoping Review," Social Sciences, MDPI, vol. 8(4), pages 1-18, April.
    2. Cecilia T. Hardacker & Anna Baccellieri & Elizabeth R. Mueller & Linda Brubaker & Georgia Hutchins & Jory Luc Yimei Zhang & Jeni Hebert-Beirne, 2019. "Bladder Health Experiences, Perceptions and Knowledge of Sexual and Gender Minorities," IJERPH, MDPI, vol. 16(17), pages 1-18, August.
    3. Amy E. Lesen & Chloe Tucker & M. G. Olson & Regardt J. Ferreira, 2019. "‘Come Back at Us’: Reflections on Researcher-Community Partnerships during a Post-Oil Spill Gulf Coast Resilience Study," Social Sciences, MDPI, vol. 8(1), pages 1-26, January.

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