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

American Journal of Public Health
Elizabeth BromleyDmitry Khodyakov

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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Citations

Jan 17, 2016·Translational Research : the Journal of Laboratory and Clinical Medicine·Dmitry KhodyakovElizabeth Bromley
Sep 8, 2016·Prevention Science : the Official Journal of the Society for Prevention Research·David HenryMichael Schoeny
Jul 12, 2017·Journal of Empirical Research on Human Research Ethics : JERHRE·Elizabeth BromleyDmitry Khodyakov
Nov 20, 2018·Issues in Mental Health Nursing·Brenda HappellBrett Scholz
Jan 5, 2018·Science and Engineering Ethics·Dianne QuigleyXiaofan Wei
Apr 7, 2019·EcoHealth·Urinda Alamo-HernándezHoracio Riojas-Rodríguez
Sep 5, 2019·International Journal of Environmental Research and Public Health·Cecilia T HardackerJeni Hebert-Beirne
May 10, 2017·Journal of Community Genetics·Caress DeanWiley D Jenkins
Dec 14, 2017·Qualitative Health Research·Elena WilsonVirginia Dickson-Swift
Apr 4, 2021·American Journal of Community Psychology·Samantha TeixeiraLinda Sprague Martinez
Jun 11, 2021·Child & Adolescent Social Work Journal : C & a·M ShaikhT Forneris
Jul 2, 2021·BMC Medical Ethics·Karine DubéJeremy Sugarman
Jul 29, 2021·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Gabriela PavariniKamaldeep Bhui
Sep 18, 2021·Journal of Managed Care & Specialty Pharmacy·Leticia R MoczygembaMichael Johnsrud
Sep 29, 2021·Journal of Managed Care & Specialty Pharmacy·Leticia R MoczygembaMichael Johnsrud

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