Ethical Issues in Engaged Research
Community-Campus Partnerships for Health (CCPH) is participating in Re-Engaging Ethics: Ethical Issues in Engaged Research, funded by the Greenwall Foundation. The project is led by Dr. Giselle Corbie-Smith, Professor of Social Medicine and Medicine at the University of North Carolina at Chapel Hill (UNC), and Director UNC Center for Health Equity Research. Project co-investigators include Al Richmond, CCPH Executive Director; Mysha Wynn, Executive Director, Project Momentum, Inc; and Dr. Stuart Rennie, Associate Professor, UNC Social Medicine.
The project aims to create guidelines to guide the conduct of engaged research and is informed by an array of stakeholders conducting and supporting research including academic researchers, community partners, IRB representatives, and ethicists.
Preliminary Ethical Statements
Pre-conference attendees at CCPH’s 2016 International Conference formulated the following 15 ethical statements to guide the development and conduct of community engaged research. CCPH members involved in and impacted by research conducted in community settings are encouraged to further shape guidelines by providing your feedback.
- Researchers and communities are accountable for their presence and impact.
- Researchers and communities strive for active partnerships that honor shared power and resources, co-learning and mutual respect.
- Community engaged research is responsive to the structural conditions responsible for poor health and deprivation, and contribute to the improvement of fundamental participant and community welfare
- Community engagement should be guided by a broad conception of justice, which includes responding to existing and historic injustices.
- Community and academic researchers, in partnership, determine whether and how proposed research is important, relevant, and valuable
- Those parties involved in CBPR should engage the community of interest in the planning, implementation and dissemination of research.
- Researchers and communities should be transparent with one another. Mutual transparency fosters trust and leads to strong communication within partnerships.
- When deciding to contact either a community or research institution, contactors should familiarize themselves first with the community or institution. CBPR projects should be aware of previously existing relationships and the historical, cultural, and social context, so as to understand community concerns, needs and assets.
- In engaged research, attention must be paid not only to risks, benefits, and autonomy of individual research participants, but risks, benefits and autonomy as they relate to communities
- To ensure fair selection and scientific validity, community and academic researcher expertise should inform identification of potential participants.
- The process of obtaining consent should be informed by community and academic researcher expertise to take into account cultural, historical, and social context.
- Communities should provide input as to what constitutes acceptable risks and benefits
- Findings and data should be accessible to every stakeholder in order to increase dissemination of results and support sustainability– regardless of whether the findings are negative, null or positive.
- Community and academic researchers should aim for the sustainability, responsible closure or transition of projects.
- Community and academic researchers should commit to intentional relationship building over time. Consideration must be given to establishing a network of communication that extends beyond a project.