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

Deverka, Patricia A; Majumder, Mary A; Villanueva, Angela G; Anderson, Margaret; Bakker, Annette C; Bardill, Jessica; Boerwinkle, Eric; Bubela, Tania; Evans, Barbara J; Garrison, Nanibaa' A; Gibbs, Richard A; Gentleman, Robert; Glazer, David; Goldstein, Melissa M; Greely, Hank; Harris, Crane; Knoppers, Bartha M; Koenig, Barbara A; Kohane, Isaac S; La Rosa, Salvatore; Mattison, John; O'Donnell, Christopher J; Rai, Arti K; Rehm, Heidi L; Rodriguez, Laura L; Shelton, Robert; Simoncelli, Tania; Terry, Sharon F; Watson, Michael S; Wilbanks, John; Cook-Deegan, Robert; McGuire, Amy L

doi:10.1186/s13073-017-0476-3

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

Clicks: 312

ID: 19104

2017

Article Quality & Performance Metrics

Overall Quality

Not rated

Combines reader engagement with the AI quality analysis. This article has not been analysed, so there is no overall score — reader engagement is measured and shown alongside.

Reader Engagement Popular Article

74.3 /100

312 views

231 readers

AI Quality Assessment

Not analyzed

Readership in this journal

Popular

Ranked #6 of 8 articles by views in genome medicine

Mint this article as an NFT

Not yet minted

Create a permanent, verifiable on-chain record of this article on the Scimatic Network. The NFT is held in your Journament account, and you can withdraw it to your own wallet at any time.

5 SUSD one-off · no wallet required

Sign in to mint

Abstract

EN
- Turkish
- Spanish
- Portuguese
- Arabic
- Chinese
- French
- German
- Indonesian
- Russian
- Thai

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.

Reference Key	deverka2017creatinggenome Use this key to autocite in the manuscript while using SciMatic Manuscript Manager or Thesis Manager
Authors	Patricia A Deverka, Mary A Majumder, Angela G Villanueva, Margaret Anderson, Annette C Bakker, Jessica Bardill, Eric Boerwinkle, Tania Bubela, Barbara J Evans, Nanibaa' A Garrison, Richard A Gibbs, Robert Gentleman, David Glazer, Melissa M Goldstein, Hank Greely, Crane Harris, Bartha M Knoppers, Barbara A Koenig, Isaac S Kohane, Salvatore La Rosa, John Mattison, Christopher J O'Donnell, Arti K Rai, Heidi L Rehm, Laura L Rodriguez, Robert Shelton, Tania Simoncelli, Sharon F Terry, Michael S Watson, John Wilbanks, Robert Cook-Deegan, Amy L McGuire Are you one of these authors? Claim your profile
Journal	genome medicine
Year	2017
DOI	10.1186/s13073-017-0476-3 Searching for DOI...
URL	https://doi.org/10.1186/s13073-017-0476-3
Keywords	Keywords not found

Citations

No citations found. To add a citation, contact the admin at info@scimatic.org

Comments

Login to comment Register

No comments yet. Be the first to comment on this article.