Abstract
Personalized and precision medicine initiatives explicitly call for researchers to treat research participants as partners. One way to realize that goal is by returning individual research results to participants. I propose a number of concrete steps that could facilitate that process.
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Acknowledgements
The author is grateful to N. Thakur, J. Wilbanks, S. F. Terry, E. Topol, B. J. Evans, N. Anderson, L. Jamal, I. Lopes-Cendes, M. N. Meyer, R. Cook-Deegan and K. Hudson for helpful discussions. The author's work has been supported in part by NIH grants 1P50-DK096415-01 and 5P50-HG003391-07. The author is an unpaid member of the Board of Directors of personalgenomes.org and an unpaid member of the Genetic Alliance Institutional Review Board.
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Children's Hospital of Wisconsin Genetics and Genomics Program
Clinical Sequencing Exploratory Research Consortium
Geisinger GenomeFIRST™ Medicine
Million Veteran Program return of results policy
Precision Medicine Participant Engagement and Health Equity Workshop
Patient-Centered Outcomes Research Institute (PCORI)
Platform for Engaging Everyone Responsibly (PEER)
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Angrist, M. Start me up: ways to encourage sharing of genomic information with research participants. Nat Rev Genet 16, 435–436 (2015). https://doi.org/10.1038/nrg3981
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DOI: https://doi.org/10.1038/nrg3981
