Thursday, May 10, 2012

Promoting Community-Based Participatory Research

When the AAHRPP Accreditation Standards were revised in 2009, Element I.4.C. was added, that requires organizations to promote the involvement of community members, when appropriate, in the design and implementation of research and the dissemination of results. An organization can conduct community-based participatory research to meet the new Element. This methodology involves community members in the research process, but it presents unique ethical challenges to IRBs.

Educate your IRB about the ethical issues related to community-based participatory research:
  • Consider the risks to the community, as well as the individual participants.
  • Evaluate the working relationships between the researchers and community members, including the possibility for undue influence on the community members when they are prospective participants.
  • Obtain consent from community members who are both research participants and representatives of the research team (e.g., conducting surveys).
  • Approve the use of interview tools that evolve and change from one interview to the next.
  • Provide research results to the community.

Experts in your organization might serve as consultants, IRB members, or teachers. Literature reviews show that community-based participatory research is increasing in the scientific community and is being sponsored by both public and private funders. Organizations should encourage researchers to conduct this type of research and train IRBs to review it. Working together can benefit all—researchers, the organization, the IRB, and the community—while still protecting participants in the research.

Representative publications on community-based participatory research and IRBs:

Brugge, D. Institutional review boards need to increase their understanding of community-based participatory research: commentary on a case study in the ethics of mental health research. J Nerv Ment Dis. 2012 Mar;200(3):242.

Brown P, Morello-Frosch R, Brody JG, Altman RG, Rudel RA, Senier L, PĂ©rez C, Simpson R. Institutional review board challenges related to community-based participatory research on human exposure to environmental toxins: A case study. Environ Health. 2010 Jul 16;9:39.

Hyatt RR, Gute DM, Pirie A, Page H, Vasquez I, Dalembert F. Transferring knowledge about human subjects protections and the role of institutional review boards in a community-based participatory research project. Am J Public Health. 2009 Nov;99 Suppl 3:S526-31.

Flicker S, Travers R, Guta A, McDonald S, Meagher A. Ethical dilemmas in community-based participatory research: recommendations for institutional review boards. J Urban Health. 2007 Jul;84(4):478-93. Accessed 4/23/2012.

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