Journal of clinical and translational science · 2026
Preferences of research participants with experience receiving individual results for future return of results.
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Appelbaum Paul S, OByrne Sheila Marie, Zhang Zirui, Chung Wendy K, Hripcsak George, Kiryluk Krzysztof, Weng Chunhua, Lee Shing, Green Nancy S
Аннотация
INTRODUCTION: Research participants express strong desires to receive their individual research results (IRR), consistent with key ethical principles of research. Participants' preferences, especially when based on past experiences with IRR, can help in formulating approaches to the process.
METHODS: Participants (n = 149) were recruited from a site of the eMERGE-IV study, which returned risk estimates for 8 common diseases based on polygenic scores and other factors. Most were White, highly educated, and English-speaking. Participants completed an online survey regarding their eMERGE experiences, the impact of IRR on future research participation, and their preferences for returning results.
RESULTS: Respondents indicated that receiving results would be very important in their decisions about future studies; 64.9% gave it the highest importance rating. They wanted IRR to improve their own and their families' health. Concerns about risks were low. Most said they were likely to share the information with other people. Respondents preferred receiving results from health professionals associated with the study, as opposed to their own physicians. They favored return by email and videoconferencing, as opposed to in-person visits or mail. Respondents desired information in various formats to help them understand and act on the results.
CONCLUSIONS: These results underscore the importance that research participants place on IRR and provide guidance on the best ways to provide them. A strength of these findings is that they reflect the experiences of respondents who already received IRR. Investigators should consider how best to offer IRR to their participants; funders should provide appropriate support for the process.
METHODS: Participants (n = 149) were recruited from a site of the eMERGE-IV study, which returned risk estimates for 8 common diseases based on polygenic scores and other factors. Most were White, highly educated, and English-speaking. Participants completed an online survey regarding their eMERGE experiences, the impact of IRR on future research participation, and their preferences for returning results.
RESULTS: Respondents indicated that receiving results would be very important in their decisions about future studies; 64.9% gave it the highest importance rating. They wanted IRR to improve their own and their families' health. Concerns about risks were low. Most said they were likely to share the information with other people. Respondents preferred receiving results from health professionals associated with the study, as opposed to their own physicians. They favored return by email and videoconferencing, as opposed to in-person visits or mail. Respondents desired information in various formats to help them understand and act on the results.
CONCLUSIONS: These results underscore the importance that research participants place on IRR and provide guidance on the best ways to provide them. A strength of these findings is that they reflect the experiences of respondents who already received IRR. Investigators should consider how best to offer IRR to their participants; funders should provide appropriate support for the process.