Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience

Amy L. McGuire; Melissa Basford; Lynn G. Dressler; Stephanie M. Fullerton; Barbara A. Koenig; Rongling Li; Cathy A. McCarty; Erin Ramos; Maureen E. Smith; Carol P. Somkin; Carol Waudby; Wendy A. Wolf; Ellen Wright Clayton

doi:10.1101/gr.120329.111

Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience

Amy L. McGuire, Melissa Basford, Lynn G. Dressler, Stephanie M. Fullerton, Barbara A. Koenig, Rongling Li, Cathy A. McCarty, Erin Ramos, Maureen E. Smith, Carol P. Somkin, Carol Waudby, Wendy A. Wolf, Ellen Wright Clayton

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Abstract

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.

Original language	English (US)
Pages (from-to)	1001-1007
Number of pages	7
Journal	Genome research
Volume	21
Issue number	7
DOIs	https://doi.org/10.1101/gr.120329.111
State	Published - Jul 2011

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McGuire, A. L., Basford, M., Dressler, L. G., Fullerton, S. M., Koenig, B. A., Li, R., McCarty, C. A., Ramos, E., Smith, M. E., Somkin, C. P., Waudby, C., Wolf, W. A., & Clayton, E. W. (2011). Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience. Genome research, 21(7), 1001-1007. https://doi.org/10.1101/gr.120329.111

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Ethical and practical challenges of sharing data from genome-wide association studies: The eMERGE Consortium experience

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