212459 Ethical challenges in community-based research

Monday, November 9, 2009: 10:55 AM

Darlene Perkins, RN, MSN, PhD(c) , Johns Hopkins University, Homer, AR
Historically, ethical principles have not been applied to the entity of community. The ethics of research typically focused on individual rights. Therefore, community harms have resulted from a lack of understanding for some population groups. Community-based research enlists culturally sensitive methodologies while providing equitable benefits to both the community and the researcher. The research must be relevant, meaningful, and culturally appropriate to the group and must protect the population group's interests and well-being. The concept of community harm has only recently been considered. The terms community-focused and community-based research have become buzz phrases; however, in reality much research is still community-placed at best.

Working with communities in equal partnerships requires respectful collaboration from the beginning stages of the research plan. Multiple systematic requirements may place burdens on the researcher and community. Academic and funding restrictions may pose many challenges. The current structure of research practice may present many obstacles when wanting to establish community trust, collaboration, and comprehensive dissemination. Discussions between funders, academic institutions, community gate keepers, and leaders must be initiated early and often in the process.

Priority must be given to establishing the definition of the community and knowing who has the right to identify the political boundaries and members of the group. Specific ethical challenges must be considered with the assistance of the community leaders. The community knows what issues are most important to them and the research team can offer scientific guidance. Respectful partnerships between both the research team and the community will make for a successful project.

Learning Objectives:
1. Discuss two ethical considerations when conducting research with community members. 2. Describe two community roles in ensuring ethical research practice and protecting participantsí interests in the design, implementation, and follow-up to research on population health concerns.

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a PhD candidate with Johns Hopkins University and a Graduate Fellow with NIH/NINR.
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.