Importance of a Place-based and Community-Moderated System of Research Oversight to Maximize Benefits for Social Change
Keywords:
Community-located research, Research ethics, participatory researchAbstract
Research is a critical phase of the process of social change. The evidence generated by research is used to document inequities and disparities, frame debates, inform advocacy, mobilize change agents, and plan and evaluate the effectiveness of proposed solutions. The Institutional Review Board infrastructure in the United States was created to prevent the ethical violations that had historically occurred in research with human subjects, particularly research that engaged participants from vulnerable populations. This system of research review and oversight puts authority and capacity in the hands of the research institutions. For research that occurs in communities, particularly vulnerable communities such as minority or impoverished communities, this establishes a power dynamic where those conducting the research are beholden only to their own institutions and the federal government to determine the ethical conduct of their research. Furthermore, while IRBs are designed to ensure the protection of individual human subjects in the research process, they are not well-equipped to protect or respond to the broader interests of communities. Lastly, IRBs are not set up to assess or address geographic concentrations of research that occurs when research is overseen by multiple research institutions co-located in the same communities. One solution for these ethical oversight failures is the creation of a community IRB, or community research review board (CRRB). These CRRBs experience systemic challenges in their development and sustainability, including a lack of non-categorical funding mechanisms applicable to the development of community research capacity and research review and oversight infrastructure. This article reviews the research literature on this topic, highlights a case study from the West Philadelphia Promise Zone, and makes five recommendations for supporting the development and sustainability of place-based and community-moderated systems of research review and oversight.
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