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Start me up: ways to encourage sharing of genomic information with research participants

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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Correspondence to Misha Angrist.

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FURTHER INFORMATION

Children's Hospital of Wisconsin Genetics and Genomics Program

Clinical Sequencing Exploratory Research Consortium

Geisinger GenomeFIRST Medicine

Genes for Good

Genomics England

Million Veteran Program

Million Veteran Program return of results policy

My46

NIH Genomic Data Sharing

Precision Medicine Initiative

Precision Medicine Participant Engagement and Health Equity Workshop

Patient-Centered Outcomes Research Institute (PCORI)

Platform for Engaging Everyone Responsibly (PEER)

PCORI engagement criteria

Sage Bionetworks' Participant-Centric Consent Toolkit

The Personal Genome Project

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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

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