Preferences and Expectations for Return of Individual Research Results Survey
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Sayeed and colleagues developed this survey for use in the Project Baseline Health Study, which collected a variety of participant data, including genetic test results. The survey includes questions about which results participants would be willing to share with clinical professionals (e.g., doctor, nurse), confidence in the safety of their personal health information, perception of the potential benefits, feelings upon getting results, interest in future test results, and other topics.
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Citation:
Sayeed, S., Califf, R., Green, R., Wong, C., Mahaffey, K., Gambhir, S. S., Mega, J., Patrick-Lake, B., Frazier, K., Pignone, M., Hernandez, A., Shah, S. H., Fan, A. C., Krug, S., Shaack, T., Shore, S., Spielman, S., Eckstrand, J., Wong, C. A. & Project Baseline Health Study Research Group. (2021). Return of individual research results: What do participants prefer and expect?. PloS One, 16(7), e0254153.