Ethical Issues in Community-Based Participatory Research Studies

STEVEN S. COUGHLIN, PHD AND LELAND k. ACKERSON, SCD

Respect for communities and individuals, distributional justice, and the provision of benefits are core values and principles of community-based participatory research (CBPR). Additional values and ethical principles also underlie this approach to research in diverse communities (for example, social justice, power sharing, transparency, and trust). The ethical issues in CBPR include those that arise in all human subjects research (for example, the need for institutional review board [IRB] review and the obligation to minimize risks and potential harms while providing benefits to research participants) and additional issues that arise because of the focus on community concerns and benefits. Other ethical challenges arise because of the collaborative approach to research that involves working closely with community partners in all aspects of the research process. As highlighted throughout this book, community members, organizational representatives, and academic researchers participate in and share control over all phases of the CBPR research process including assessment and definition of the problem; selection of research methods; data collection, analysis, and interpretation; and dissemination of findings. While this collaborative approach to research can raise novel ethical challenges, it also helps to minimize potential problems such as the stigmatization of communities due to the release of sensitive data by researchers without prior consultation, communities feeling further marginalized by research, or researchers advancing their academic careers at the expense of community members, who may be left feeling overresearched or misled.1 The CBPR approach minimizes the likelihood of research that is irrelevant or insensitive to community concerns. The inclusion of community members in the research team as equal partners helps to protect the community from harm and exploitation and supports self-determination.2

Community collaboration and involvement is both an ethical feature of CBPR and part of the definition of this justice-oriented approach to research. Collaboration requires sharing of experience and leadership (reciprocity), transparency, and the development of trust between academic researchers and community partners, all of which have ethical implications.2-4 Through the hiring and training of community members, CBPR can help build community capacity to address health concerns, help to develop resources, and redress prior research that may not have offered direct benefits for participating communities.5

 
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