Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium.
Clayton, Ellen Wright
Fullerton, Stephanie M.
McCarty, Catherine A.
Koenig, Barbara A.
McGuire, Amy L.
Beskow, Laura M.
Lemke, Amy A.
Ramos, Erin M.
Rodriguez, Laura Lyman
Genetics in medicine : official journal of the American College of Medical Genetics 2010 Oct; 12(10): 616-20
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Ethical and Practical Challenges of Sharing Data From Genome-Wide Association Studies: The eMERGE Consortium Experience 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 Wright (2011-07)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 ...
Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group. Fabsitz, Richard R.; McGuire, Amy; Sharp, Richard R.; Puggal, Mona; Beskow, Laura M.; Biesecker, Leslie; Bookman, Ebony; Burke, Wylie; Burchard, Esteban Gonzalez; Church, George; Clayton, Ellen Wright; Eckfeldt, John H.; Fernandez, Conrad V.; Fisher, Rebecca; (2010-12-01)In January 2009, the National Heart, Lung, and Blood Institute convened a 28-member multidisciplinary Working Group to update the recommendations of a 2004 National Heart, Lung, and Blood Institute Working Group focused ...
Trinidad, Susan Brown; Fullerton, Stephanie M; Bares, Julie M; Jarvik, Gail P; Larson, Eric B; Burke, Wylie (2010-08)Sharing study data within the research community generates tension between two important goods: promoting scientific goals and protecting the privacy interests of study participants. This study was designed to explore the ...