| Autor: |
John Wilbanks, Juli Bollinger, Bartha Maria Knoppers, Robert Cook-Deegan, Patricia A. Deverka, Arti K. Rai, Michael S. Watson, Eric Boerwinkle, Barbara A. Koenig, Amy L. McGuire, Sharon F. Terry, Mary A. Majumder, Laura Lyman Rodriguez, Nanibaa’ A. Garrison, Jessica Bardill, Melissa M. Goldstein, John E. Mattison, Barbara J. Evans, Henry T. Greely, Tania Simoncelli, J. Mark Lambright, Adrian Thorogood, Scott Kahn, Christopher P. O'Donnell, Tania Bubela, David Glazer, Angela G. Villanueva |
| Rok vydání: |
2019 |
| Předmět: |
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| Zdroj: |
Journal of Law, Medicine & Ethics. 47:12-20 |
| ISSN: |
1748-720X
1073-1105 |
| DOI: |
10.1177/1073110519840480 |
| Popis: |
Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC). We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes. |
| Databáze: |
OpenAIRE |
| Externí odkaz: |
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