community review boards for research?

(Washington, DC) If you work at a federally funded institution like mine and you want to collect data from human beings or animals, you need permission from an Institutional Review Board. Its purview is ethics, and specifically the ethical treatment of the individuals from whom data is collected. Although the idea of a IRB intimidates some new researchers, you can learn to navigate the process routinely. I believe I am the PI on more than a dozen IRB-approved projects right now.

I have often heard the argument that the review should be broader; it should consider impacts on whole communities and issues like cultural sensitivity and whether results are shared in useful forms. Likewise, the reviewers should be more diverse, including laypeople from the community as well as experts.

I now read that there are in fact several community review boards in operation that consider such issues, apart from or in addition to research ethics.* They gain their approval power from agreements with local institutions that agree to participate. For instance, in Hawaii, five nonprofits and three universities or university-based centers have agreed to put all research proposals involving the Native population through a community committee’s screening.

I must admit that I have mixed feelings. On the one hand, research is usually supported by the government (directly or otherwise) and has social impact, whether positive or negative. Thus researchers should be accountable to the public for their questions, methods, and presentations. Community members have a right to express their views and valuable perspectives to offer.

On the other hand, research is already quite bureaucratic, and every extra layer of review means another set of forms and meetings. Also, there are potential costs to academic freedom. We might start with an assumption that citizens may talk to and observe other citizens and say what they want as a result. That is a First Amendment right, meant partly to protect individuals so that they can say things that are critical and uncomfortable. Although we may want to oversee a scholar when government money is supporting organized research, liberty remains a consideration. For instance, if a community panel blocked a study because it was critical of the community’s norms, that would be a violation of free speech. Finally, I would wonder whether any committee could truly represent a community.

Despite the caveats in the last paragraph, this is an innovation to watch and to consider.

*Shore N, Park A, Castro P, Wat E, Sablan-Santos L, Isaacs ML, Freeman E, Cooks JM, Drew E, Seifer SD. Redefining Research Ethics Review: Case Studies of Five Community-Led Models. Seattle, WA: Community-Campus Partnerships for Health, 2014.

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About Peter

Associate Dean for Research and the Lincoln Filene Professor of Citizenship and Public Affairs at Tufts University's Tisch College of Civic Life. Concerned about civic education, civic engagement, and democratic reform in the United States and elsewhere.