Creating a data resource: what will it take to build a medical information commons?

TitleCreating a data resource: what will it take to build a medical information commons?
Publication TypeJournal Article
Year of Publication2017
AuthorsDeverka, PA, Majumder, MA, Villanueva, AG, Anderson, M, Bakker, AC, Bardill, J, Boerwinkle, E, Bubela, T, Evans, BJ, Garrison, N'A, Gibbs, RA, Gentleman, R, Glazer, D, Goldstein, MM, Greely, H, Harris, C, Knoppers, BM, Koenig, BA, Kohane, IS, La Rosa, S, Mattison, J, O'Donnell, CJ, Rai, AK, Rehm, HL, Rodriguez, LL, Shelton, R, Simoncelli, T, Terry, SF, Watson, MS, Wilbanks, J, Cook-Deegan, R, McGuire, AL
JournalGenome Med
Volume9
Issue1
Pagination84
Date Published2017 Sep 22
ISSN1756-994X
Abstract

National and international public-private partnerships, consortia, and government initiatives are underway to collect and share genomic, personal, and healthcare data on a massive scale. Ideally, these efforts will contribute to the creation of a medical information commons (MIC), a comprehensive data resource that is widely available for both research and clinical uses. Stakeholder participation is essential in clarifying goals, deepening understanding of areas of complexity, and addressing long-standing policy concerns such as privacy and security and data ownership. This article describes eight core principles proposed by a diverse group of expert stakeholders to guide the formation of a successful, sustainable MIC. These principles promote formation of an ethically sound, inclusive, participant-centric MIC and provide a framework for advancing the policy response to data-sharing opportunities and challenges.

DOI10.1186/s13073-017-0476-3
Alternate JournalGenome Med
PubMed ID28938910
PubMed Central IDPMC5610432
Grant ListP20 HG007243 / HG / NHGRI NIH HHS / United States
U01 HG006507 / HG / NHGRI NIH HHS / United States
K01 HG008818 / HG / NHGRI NIH HHS / United States
U54 HG007963 / HG / NHGRI NIH HHS / United States
U01 HG006500 / HG / NHGRI NIH HHS / United States
R01 HG008918 / HG / NHGRI NIH HHS / United States
U01 HG007307 / HG / NHGRI NIH HHS / United States