Abstract

Patient and community engagement in research has become widespread. Commonly cited benefits of engaged research include community buy-in and increased participation, improved patient and community understanding of the research process and materials, and improved health care quality. In addition to these tangible benefits, it has also been suggested that patient/community engagement is an ethical approach to research that is important in and of itself. However, engaged research poses new ethical challenges as the role of individuals in research has been reconceptualized from “subjects” to “participants” and even “partners.” These new roles recognize the agency and expertise of patients and community members who are involved in a wide range of research tasks and activities. This chapter proposes a preliminary ethical framework for patient and community-engaged research, taking into account the multiple roles that individuals involved in engaged research often occupy: enrolled individuals (traditionally the “subject” role), engaged participants, and research partners. This framework acknowledges the tension in engaged research, as researchers often simultaneously work to uphold the dominant ethical frames embedded in scientific institutions that direct research practices while also recognizing that these frames are flawed.