Creating a data resource: what will it take to build a medical information commons?
Clicks: 266
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
74.6
/100
266 views
185 readers
Trending
AI Quality Assessment
Not analyzed
Readership in this journal
PopularRanked #7 of 8 articles by views in genome medicine
Most read
Least read
Bar heights use a square-root scale.
Mint this article as an NFT
Not yet mintedCreate 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
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.
| Reference Key |
deverka2017creatinggenome
Use this key to autocite in the manuscript while using
SciMatic Manuscript Manager or Thesis Manager
|
|---|---|
| Authors | 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; |
| Journal | genome medicine |
| Year | 2017 |
| DOI |
10.1186/s13073-017-0476-3
|
| URL | |
| Keywords | Keywords not found |
Citations
No citations found. To add a citation, contact the admin at info@scimatic.org
Comments
No comments yet. Be the first to comment on this article.