243511 A normative framework for community engagement: When and why should communities be engaged in research

Monday, October 31, 2011

Jessica Holzer, MA , Health Policy and Management, Johns Hopkins School of Public Health, Baltimore, MD
Nancy Kass, ScD , Berman Institute of Bioethics, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
Background: Community engagement (CE) in research is gaining attention as a way to improve research and the health of communities, as well as to demonstrate respect for such communities. As more and more community engagement is conducted, and as more funders require this practice, having a clear understanding of the ethical underpinnings of such an approach is important. Currently, there is no widely available normative framework for determining when and why CE is appropriate. Methods: The literature on CE in research, the ethical issues in CE, identity and community membership, vulnerability, social justice, and research ethics was collected and reviewed. Using an analysis of the ethical theories and arguments for the consequences of CE research and duties to individuals and communities, a normative framework is developed for CE that addresses when and why communities should be engaged in research. Results: Results will be presented on the characteristics of communities and research that are relevant in ethical justifications for CE, and the contribution CE can make to ethical research. Characteristics include the vulnerability of communities in research, the research design, the risks and benefits of the research, historical experiences of communities with research, and the demand for research within the community. Conclusion: This project is among the first to provide a normative framework of CE. The framework may help researchers and communities evaluate their plans for engagement, or consider when to include engagement in a planned research project. It can provide an important guide when researchers are working with vulnerable communities.

Learning Areas:
Diversity and culture
Ethics, professional and legal requirements
Public health or related research

Learning Objectives:
1) Discuss the duties researchers have to communities in research. 2) Describe the characteristics of research and communities that make community engagement in research ethically appropriate. 3) Evaluate their community engaged projects with the normative framework provided.

Keywords: Ethics, Community-Based Partnership

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have conducted the research and developed the normative framework for engagement under the guidance of Dr. Nancy Kass.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

See more of: Issues in Public Health Ethics
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