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dc.creatorMcGuire, Amy Len
dc.creatorBasford, Melissaen
dc.creatorDressler, Lynn Gen
dc.creatorFullerton, Stephanie Men
dc.creatorKoenig, Barbara Aen
dc.creatorLi, Ronglingen
dc.creatorMcCarty, Cathy Aen
dc.creatorRamos, Erinen
dc.creatorSmith, Maureen Een
dc.creatorSomkin, Carol Pen
dc.creatorWaudby, Carolen
dc.creatorWolf, Wendy Aen
dc.creatorClayton, Ellen Wrighten
dc.date.accessioned2016-01-09T00:33:52Zen
dc.date.available2016-01-09T00:33:52Zen
dc.date.created2011-07en
dc.date.issued2011-07en
dc.identifierdoi:10.1101/gr.120329.111en
dc.identifier.bibliographicCitationGenome research 2011 Jul; 21(7): 1001-7en
dc.identifier.urihttp://worldcatlibraries.org/registry/gateway?version=1.0&url_ver=Z39.88-2004&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&atitle=Ethical+and+practical+challenges+of+sharing+data+from+genome-wide+association+studies:+the+eMERGE+Consortium+experience.&title=Genome+research+&volume=21&issue=7&date=2011-07&au=McGuire,+Amy+L;+Basford,+Melissa;+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;+Clayton,+Ellen+Wrighten
dc.identifier.urihttp://dx.doi.org/10.1101/gr.120329.111en
dc.identifier.urihttp://hdl.handle.net/10822/1016515en
dc.description.abstractIn 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.en
dc.formatArticleen
dc.languageenen
dc.sourceeweb:339809en
dc.subjectDNAen
dc.subjectGenetic Researchen
dc.subjectGenomeen
dc.subjectGenome-Wide Association Studiesen
dc.subjectGenomicsen
dc.subjectHealthen
dc.subjectHuman Genomeen
dc.subjectInvestigatorsen
dc.subjectMedical Recordsen
dc.subjectRecordsen
dc.subjectResearchen
dc.subjectResearchersen
dc.subjectStakeholdersen
dc.subject.classificationSocial Control of Science and Technologyen
dc.subject.classificationGenetics and Human Ancestryen
dc.subject.classificationInformation Science Ethicsen
dc.titleEthical and Practical Challenges of Sharing Data From Genome-Wide Association Studies: The eMERGE Consortium Experienceen
dc.provenanceCitation prepared by the Library and Information Services group of the Kennedy Institute of Ethics, Georgetown University for the ETHXWeb database.en
dc.provenanceCitation migrated from OpenText LiveLink Discovery Server database named EWEB hosted by the Bioethics Research Library to the DSpace collection EthxWeb hosted by DigitalGeorgetown.en


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