From Subject to Participant: Ethics and the Evolving Role of Community in Health Research

• In Event: 118 - Regular Session. Ethics and Science

Abstract

Community members, patient representatives, and other lay stakeholders are playing an increasingly important role in health research. A growing literature indicates that new models of community-engaged research require novel ethical approaches. In this paper, we use interview data from 29 community-engaged research participants to review the impact of stakeholder engagement on the principles and practice of research ethics. We advance a theoretical argument that the focus of contemporary research ethics has shifted from subject to participant. If research ethics has been traditionally organized by a concern for the wellbeing of the enrolled subject who provides data, today’s community-engaged research ethics is organized by a concern for the wellbeing of research participants of any type, real and imagined, from community partners to hypothetical community members. If the role of the traditional research subject was time-limited, context-dependent, and task-focused, the role of the contemporary research participant is emergent, multifaceted, and negotiable. As a result, community-engaged research projects confront novel ethical question that are not readily resolved with reference to traditional ethical research principles (i.e., The Belmont Report) or protocols. To illustrate the subject to participant shift, we review the types of ethical challenges encountered by interviewees during their community-engaged research projects, and we describe the reinterpretation of Belmont principles they pursued in the course of their research in an effort to resolve conflicts and pursue ethical action. We conclude by proposing some strategies to address new ethical concerns in stakeholder-engaged research.

Authors

• Elizabeth Bromley, University of California-Los Angeles

• Dmitry Khodyakov, RAND Corporation

• Lisa Mikesell, State University of New Jersey-Rutgers