Emerging Ethical Issues to Consider When Conducting Community-Engaged Research
In community-engaged research, investigators partner with local groups regarding a specific health outcome or metric. A community representative is co-investigator.
“Ethical considerations include identifying a true representative of the community — a pastor, for example, or a patient advocate through a nonprofit for certain diseases,” says Habib Rizk, MD, chair of the clinical and translational research ethics consultation service at the Medical University of South Carolina in Charleston.
It also is important that the representative works with researchers to ensure the clinical trial results in incentives to the community. For instance, community members might receive better access to screening tools for chronic diseases, such as diabetes or hypertension.
Rizk says researchers should consider these questions about community partners: Does the community representative possibly have a conflict of interest? How will any monetary incentives to participate in the study be distributed? Is the incentive for individual patients or the whole community?
Additionally, consider how investigators will communicate the progress or results of the research to participants and to the community. If individual participants express any concerns about the study, should they contact the research team or the community representative?
IRBs should ensure the community partner is compliant with all requirements and is ready to act as a co-investigator.
“They will also be looking at how the research is going to benefit the community that is partnering with the researchers,” Rizk says.
Does the community representative possibly have a conflict of interest? How will any monetary incentives to participate in the study be distributed? Is the incentive for individual patients or the whole community?
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