Why Engage Communities?

Abstract: It is increasingly popular to emphasize community engagement in biomedical research. In this talk, I discuss one set of guidelines for engaging communities—the Good Participatory Practice (GPP) guidelines for the conduct of HIV prevention research. While these guidelines are on the whole quite sensible, I will point out that they are also vague on some critical points, including how to identify which stakeholders to consult and what to do when stakeholders who are consulted make requests that researchers find infeasible or ill-advised. I’ll argue that current guidelines’ vagueness about what to do in these situations arises in part because it is insufficiently clear why communities are being engaged in the first place; this makes it hard to say how they should be engaged. While some theorists believe that communities should be engaged because anyone who is affected by a decision has a right to have a say over it, I argue that this is a mistake. Instead, I suggest a more deflationary, instrumental view of why communities should be engaged: because it helps researchers select better research questions and makes their investigations of those questions more likely to succeed. Adopting this understanding of the purpose of community engagement enables us to make progress on clarifying how it should be done, including with respect to those points on which current guidance is vague.