Ethical and Practical Challenges of Sharing Data from Genome-Wide Association Studies: The eMERGE Consortium Experience
Clayton, Ellen Wright
McGuire, Amy L.
Basford, Melissa Basford
Dressler, Lynn G.
Fullerton, Stephanie M.
Koenig, Barbara A.
Li, Rongling
McCarty, Cathy A.
Ramos, Erin
Smith, Maureen E.
Somkin, Carol P.
Waudby, Carol
Wolf, Wendy A.
:
2011
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.
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