Re-Engaging Ethics: Ethical Issues in Engaged Research

  ‘Engaged scholarship’ is a growing concept that embraces the involvement of those who are to be researched as potential participants and co-conductors of the research. The goal of engaged scholarship is to achieve more informed research questions that result in readily translatable outcomes. However, there is limited guidance for conducting ethical engaged research. Current research ethics guidelines were primarily created to protect research participants. Engaged scholarship requires a complimentary set of principles to guide review and conduct research that protects individual rights and enhances community welfare. This project examines the ethical issues that arise when researchers and lay community members partner as equals in the conduct of research. The community-academic team will review current literature and analyze case studies from the perspective of researchers, community members, and representatives of Institutional Review Boards (IRBs) to develop community-influenced and academic-influenced recommendations to guide organizations and researchers funding and conducting engaged research. The team will disseminate the recommendations through a webinar, regional and national conferences and events, and across the network of professional organizations and networks interested in community-academic partnered research and patient-centered research. These recommendations will support investigators and community members involved in engaged research.