Perspectives From Enrollees of a Large U.S. Health Care System on Informed Consent for Genetic Research
human research subject protection, informed consent
Background/Aims: To understand patient views about consent for secondary use and sharing of genetic data and specimens in the context of U.S. requirements for broad data sharing from the National Institutes of Health and the Department of Health and Human Services.
Methods: We surveyed 523 members of a large integrated health care system who previously participated in genetic research. We asked closed-ended questions about their perspectives on informed consent and biobanking.
Results: Of eligible participants, 273 completed the survey. Overall, sharing of genetic information and samples was acceptable in our participant population. Results about consent type were mixed –– no single type of consent was overwhelmingly preferred. However, stratification by demographics showed that nonwhites, persons with higher income and men preferred study-specific over broad consent.
Conclusion: For most research participants, the broad sharing of information and biospecimens was acceptable. More work to better understand the consent preferences of populations by demographic factors may help in recruiting diverse study populations to generate more generalizable research results that benefit all members of society.
Fuji MM, Barr L, Burke W, Thummel KE. Perspectives from enrollees of a large U.S. health care system on informed consent for genetic research. J Patient Cent Res Rev. 2016;3:194.