ELSIcon2022 Paper: Interrogating the Value of Return: Stakeholders’ Perspectives on Return of Results in Biomedical Research

The 5th ELSI Congress - ELSIcon2022

Conference

2022-06-01

ELSIcon2022 • Paper • June 1, 2022

Caitlin McMahon, Nicole Foti, Mel Jeske, William Britton, Janet Shim, and Sandra Soo-Jin Lee on behalf of Ethics of Inclusion Study Team

Over the last decade, the debate over whether or not to return research results to participants and in what contexts has shifted from a protected exception toward an expectation, even as best practices continue to develop. The "duty to report" unexpected yet clinically useful information is increasingly accepted in precision medicine research (PMR) as an extension of an individual’s right to receive information, particularly genetic results, that may have implications for their care and their families. With advances in PMR and expanding public interest, results have extended into areas beyond clinical care, including traits and ancestry. As such, the value proposition of returning results has shifted even further, as they are now framed as an inherent benefit of, and part of a reciprocal exchange for, research participation. Based on in-depth interviews, document analysis, and observations across five PMR sites, this paper examines how different research consortia have navigated the return of results. Consistent with the wider reframing of return of results as a research benefit, we observe PMR researchers focusing not on whether, but on what results can feasibly be returned, when, and how this process will impact recruitment and retention. However, this assumption of value leaves unexamined how different stakeholders conceive of value differently. These differences surface tensions between the value of return of results for researchers in promoting recruitment, enrollment, and engagement, versus for participants and communities. This contrast between study-perceived values and participant-held values interrogates the framing of return of results as an inherent benefit.

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