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

Type Journal Article Author Amy L. McGuire Author Melissa Basford Author Lynn G. Dressler Author Stephanie M. Fullerton Author Barbara A. Koenig Author Rongling Li Author Cathy A. McCarty Author Erin Ramos Author Maureen E. Smith Author Carol P. Somkin Author Carol Waudby Author Wendy A. Wolf Author Ellen Wright Clayton URL http://genome.cshlp.org/content/21/7/1001 Volume 21 Issue 7 Pages 1001-1007 Publication Genome Research ISSN 1088-9051, 1549-5469 Date 07/01/2011 Extra PMID: 21632745 Journal Abbr Genome Res. DOI 10.1101/gr.120329.111 Accessed 2016-01-25 22:03:43 Library Catalog genome.cshlp.org Language en 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. Short Title Ethical and practical challenges of sharing data from genome-wide association studies