Title | Creating a data resource: what will it take to build a medical information commons? |
Publication Type | Journal Article |
Year of Publication | 2017 |
Authors | Deverka, 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 |
Journal | Genome Med |
Volume | 9 |
Issue | 1 |
Pagination | 84 |
Date Published | 2017 Sep 22 |
ISSN | 1756-994X |
Keywords | Humans, Information Dissemination, Information Services, Medical Informatics |
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. |
DOI | 10.1186/s13073-017-0476-3 |
Alternate Journal | Genome Med |
PubMed ID | 28938910 |
PubMed Central ID | PMC5610432 |
Grant List | P20 HG007243 / 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 U01 HG006507 / HG / NHGRI NIH HHS / United States K01 HG008818 / HG / NHGRI NIH HHS / United States |
Creating a data resource: what will it take to build a medical information commons?
Similar Publications
Inverted triplications formed by iterative template switches generate structural variant diversity at genomic disorder loci. Cell Genom. 2024;4(7):100590. | .
Unveiling novel genetic variants in 370 challenging medically relevant genes using the long read sequencing data of 41 samples from 19 global populations. Mol Genet Genomics. 2024;299(1):65. | .
Genetic diversity of 1,845 rhesus macaques improves genetic variation interpretation and identifies disease models. Nat Commun. 2024;15(1):5658. | .