Human Subjects Protections in Community-Engaged Research: A Research Ethics Framework
Ross, Lainie Friedman
Nelson, Robert M.
Botkin, Jeffrey R.
Smith, George R., Jr.
Journal of Empirical Research on Human Research Ethics 2010 March; 5(1): 5-17
In the 30 years since the Belmont Report, the role of the community in research has evolved and has taken on greater moral significance. Today, more and more translational research is being performed with the active engagement of individuals and communities rather than merely upon them. This engagement requires a critical examination of the range of risks that may arise when communities become partners in research. In attempting to provide such an examination, one must distinguish between established communities (groups that have their own organizational structure and leadership and exist regardless of the research) and unstructured groups (groups that may exist because of a shared trait but do not have defined leadership or internal cohesiveness). In order to participate in research as a community, unstructured groups must develop structure either by external means (by partnering with a Community-Based Organization) or by internal means (by empowering the group to organize and establish structure and leadership). When groups participate in research, one must consider risks to well-being due to process and outcomes. These risks may occur to the individual qua individual, but there are also risks that occur to the individual qua member of a group and also risks that occur to the group qua group. There are also risks to agency, both to the individual and the group. A 3-by-3 grid including 3 categories of risks (risks to well-being secondary to process, risks to well-being secondary to outcome and risks to agency) must be evaluated against the 3 distinct agents: individuals as individual participants, individuals as members of a group (both as participants and as nonparticipants) and to communities as a whole. This new framework for exploring the risks in community-engaged research can help academic researchers and community partners ensure the mutual respect that community-engaged research requires.
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Nine Key Functions for a Human Subjects Protection Program for Community-Engaged Research: Points to Consider Ross, Lainie Friedman; Loup, Allan; Nelson, Robert M.; Botkin, Jeffrey R.; Kost, Rhonda; Smith, George R.; Gehlert, Sarah (2010-03)The ethical conduct of Community-Engaged Research (CEnR), of which the Community-Based Participatory Research (CBPR) model is the partnership model most widely discussed in the CEnR literature and is the primary model we ...
The Challenges of Collaboration for Academic and Community Partners in a Research Partnership: Points to Consider Ross, Lainie Friedman; Loup, Allan; Nelson, Robert M.; Botkin, Jeffrey R.; Kost, Rhonda; Smith, George R.; Gehlert, Sarah (2010-03)The philosophical underpinning of Community-Engaged Research (CEnR) entails a collaborative partnership between academic researchers and the community. The Community-Based Participatory Research (CBPR) model is the partnership ...
Ross, Lainie Friedman (2010-08-18)With the introduction of the new National Institutes of Health Roadmap in 2003, there has been a growing emphasis on translational research. Translational research challenges current human subjects protections guidelines ...