Role of Community Consultation in the Research Process

For community-based research projects, community consultation is an important way of involving community representatives and stakeholders in the design, review, conduct and oversight of the research project. Such a consultative process is necessary to build and maintain public trust in research, inform researchers about the values and norms of the community they wish to study, and contribute to more effective recruitment and retention of participants (particularly among marginalized or underrepresented communities). Failure to engage effectively with community representatives can put a project at risk, both scientifically and legally, as the recent scandal involving the Havasupai in Arizona demonstrates. In this paper, using examples of community consultation processes for genetic and Emergency Room research, we will describe different models of community consultation, discuss best practices, and highlight some of the challenges and pitfalls that researchers may face.