期刊
JOURNAL OF LAW MEDICINE & ETHICS
卷 47, 期 1, 页码 12-20出版社
SAGE PUBLICATIONS INC
DOI: 10.1177/1073110519840480
关键词
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资金
- National Institutes of Health, National Human Genome Research Institute [R01 HG008918]
- Can-SHARE project - Genome Quebec
- Genome Canada
- government of Canada
- Ministere de l'Economie, Innovation et Exportation du Quebec
- Canadian Institutes of Health Research [141210]
- [P20 HG007243]
- [K01 HG008818]
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.
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