Abstract: Institutional Review Boards worry about promising research participants benefits that cannot be guaranteed, or offering incentives that could be “unduly influential.” An extensive literature has debated what counts as unduly influential, with many participants preferring to emphasize the need for fair compensation for time and inconvenience. However, an issue that has receive comparatively little attention is the concept of research benefits beyond incentives. Our work with Black research participants has brought this issue to the fore. The APOLLO Network recently obtained DNA from over 3,500 deceased organ donors with African Ancestry. The purpose was to test for ApoL1 variants associated with increased risk of kidney disease, and track outcomes in organ recipients. We received an NIH grant to examine the ethical and social issues surrounding ApoL1 testing. Together with 10 members of the APOLLO Network community advisory committee, we published a paper that argued that it is unethical to ask Black people in the U.S. to participate in research without explaining how the project will benefit the Black community. Later, in a survey of over 400 participants in the APOLLO study, we found that the strongest predictor of opposition to ApoL1 genetic testing in the context of organ donation was low perceived benefit to genomic medicine overall. This was more strongly associated with opposition to ApoL1 testing than trust in the healthcare system, knowledge of genomics, politics, or religion. This presentation will conclude by exploring how we might offer, and articulate, benefits of research when recruiting participants.
Learning Objectives:
After participating in this conference, attendees should be able to:
Articulate community perspectives on the importance of benefits in research
Evaluate honest ways that researchers might increase their focus on benefits to their participants and participant communities
