Abstract
Secondary or incidental results can be identified in genomic research that increasingly uses whole exome/genome sequencing. Understanding research participants’ preferences for secondary results and what influences these decisions is important for patient education, counseling, and consent, and for the development of policies regarding return of secondary results. Two hundred nineteen research participants enrolled in genomic studies were surveyed regarding hypothetical preferences for specific types of secondary results, and these preferences were correlated with demographic information and psychosocial data. The majority of research participants (73%) indicated a preference to learn about all results offered, with no clear pattern regarding which results were not desired by the remaining participants. Participants who reported greater interest in genetic privacy were less likely to indicate a preference to learn all results, as were individuals who self-identified as Jewish. Although most research participants preferred to receive all secondary results offered, a significant subset preferred to exclude some results, suggesting that an all-or-none policy would not be ideal for all participants. The correlations between preferences to receive secondary results, religious identification, and privacy concerns demonstrate the need for culturally sensitive counseling and educational materials accessible to all education levels to allow participants to make the best choices for themselves.
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Acknowledgments
We gratefully acknowledge the contribution of the research participants. We appreciate Jessica Bulafka’s assistance with implementing the study. This work was funded by grants from the National Human Genome Research Institute through Grant Number R21 HG006596 (Dr. Appelbaum, PI) and Grant Number R01 HG006600 (Drs. Chung and Phelan, PIs), and Grant Number P50 HG007257 (Dr. Appelbaum, PI), as well as grants from the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant Number UL1 TR000040, formerly the National Center for Research Resources, Grant Number UL1 RR024156. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
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Funding
This work was funded by grants from the National Human Genome Research Institute through Grant Number R21 HG006596 (Dr. Appelbaum, PI) and Grant Number R01 HG006600 (Drs. Chung and Phelan, PIs), and Grant Number P50 HG007257 (Dr. Appelbaum, PI) as well as grants from the National Center for Advancing Translational Sciences, National Institutes of Health, through Grant Number UL1 TR000040, formerly the National Center for Research Resources, Grant Number UL1 RR024156. The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Conflict of Interest
Julia Wynn, Josue Martinez, Jimmy Duong, Codruta Chiuzan, Jo C. Phelan, Abby Fyer, Robert L. Klitzman, Paul S. Appelbaum and Wendy K. Chung have no conflict of interests.
Ethical Approval
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5).
Human Studies and Informed Consent
All procedures performed in this study were in accordance with the ethical standards of the CUCM and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Informed consent was obtained from all participants for being included in the study.
Animal Studies
No animal studies were carried out by the authors for this article.
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Wynn, J., Martinez, J., Duong, J. et al. Research Participants’ Preferences for Hypothetical Secondary Results from Genomic Research. J Genet Counsel 26, 841–851 (2017). https://doi.org/10.1007/s10897-016-0059-2
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DOI: https://doi.org/10.1007/s10897-016-0059-2