Apr 29, 2021
MRCT Center Bioethics Collaborative
1:00 PM to 4:00 PM EDT
Discussion topic: Community engagement
Despite the potential benefits of community engagement (CE), the rigor, quality, and impact of CE are difficult to assess, in part due to the lack of a standardized understanding of what is meant by CE. Relatedly, it can be challenging to define ‘community’ in the abstract, and any decision about how to specify the relevant community will be ethically and politically significant. Other ethical challenges are connected to practical issues, such as identifying individuals who can speak on behalf of a community and/or marginalized populations within a community; engaging individuals without taxing their time or services too much; and how to ensure that there is sufficient reciprocity to the interactions. Finally, it is often difficult for sponsors, sites, and investigators and their study teams to know whether they have achieved representativeness, that is, whether they have heard from an adequate range of perspectives in a community.