期刊
GENOME RESEARCH
卷 21, 期 7, 页码 1001-1007出版社
COLD SPRING HARBOR LAB PRESS, PUBLICATIONS DEPT
DOI: 10.1101/gr.120329.111
关键词
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资金
- NHGRI [R01HG004333]
- National Institute of General Medical Sciences (NIGMS) through Group Health Cooperative [U01-HG-004610]
- National Institute of General Medical Sciences (NIGMS) through Marshfield Clinic [U01-HG-004608]
- National Institute of General Medical Sciences (NIGMS) through Mayo Clinic [U01-HG-04599]
- National Institute of General Medical Sciences (NIGMS) through Northwestern University [U01-HG-004609]
- National Institute of General Medical Sciences (NIGMS) through Vanderbilt University [U01-HG-04603]
- National Center for Research Resources [UL 1 RR024150]
- University of North Carolina Center for Genomics and Society NHGRI [P50HG004488]
- Institute of Translational Health Sciences (NCRR) [UL1RR025014]
- Center for Genomics and Health Care Equality (NHGRI) [P50HG003374]
- Wayne and Gladys Valley Foundation [03-071]
- Ellison Medical Foundation [AG-IA-0046-04]
- RWJ Foundation [64362]
- KP Community Benefit
In 2007, the National Human Genome Research Institute (NHGRI) established the Electronic MEdical Records and GEnomics (eMERGE) Consortium (www.gwas.net) to develop, disseminate, and apply approaches to research that combine DNA biorepositories with electronic medical record (EMR) systems for large-scale, high-throughput genetic research. One of the major ethical and administrative challenges for the eMERGE Consortium has been complying with existing data-sharing policies. This paper discusses the challenges of sharing genomic data linked to health information in the electronic medical record (EMR) and explores the issues as they relate to sharing both within a large consortium and in compliance with the National Institutes of Health (NIH) data-sharing policy. We use the eMERGE Consortium experience to explore data-sharing challenges from the perspective of multiple stakeholders (i.e., research participants, investigators, and research institutions), provide recommendations for researchers and institutions, and call for clearer guidance from the NIH regarding ethical implementation of its data-sharing policy.
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