从受试者到参与者：伦理与社区在健康研究中不断演变的角色。
From subject to participant: ethics and the evolving role of community in health research.
作者信息
Bromley Elizabeth, Mikesell Lisa, Jones Felica, Khodyakov Dmitry
机构信息
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.
出版信息
Am J Public Health. 2015 May;105(5):900-8. doi: 10.2105/AJPH.2014.302403. Epub 2015 Mar 19.
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.
《贝尔蒙报告》的原则关注研究对象的福祉，但参与社区研究的调查人员往往避开“对象”这一角色，而采用“参与者”的角色。我们对从事10项社区参与研究的29名社区和学术调查人员进行了半结构化访谈。访谈引出了关于伦理优先事项和伦理挑战的观点。受访者借鉴《贝尔蒙报告》描述了社区参与研究的4项关键伦理原则（体现伦理行动、尊重参与者、推广善举和协商正义）。然而，参与者角色的新方面是大多数伦理挑战的根源。我们推测，伦理关注点从对象到参与者的转变将给参与社区研究的调查人员以及其他有兴趣增加社区参与健康研究的各方带来新的伦理困境。
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