The following entities are eMERGE Network members (“eMERGE Network Members” or “Members”): Group Health/University of Washington, Marsh-field Clinic, Mayo Clinic, Northwestern University and Vanderbilt University serve as the clinical sites (“Clinical Sites”); Vanderbilt University also serves as the consortium’s coordinating center (“Coordinating Center”); Broad Institute and Center for Inherited Disease Research both serve as genotyping facilities (“Genotyping Facilities”); and the National Center for Biotechnology Information (NCBI), NIH; and the National Human Genome Research Institute (NHGRI), NIH (“Program Officials”) serve as scientific and programmatic managers and technical advisors.
Researchers with a wide range of expertise in genomics, statistics, ethics, informatics, and clinical medicine employed by an eMERGE Network Member participate in the eMERGE network, including: Principal Investigators of the eMERGE Clinical Sites, the Coordinating Center, the Genotyping Facilities, and Program Officials from the National Center for Biotechnology Information and the National Human Genome Research Institute.
Data Sharing Guiding Principles: All data sharing will adhere to 1) the terms of consent agreed to by research participants; 2) applicable laws and regulations, and; 3) the principle that individual sites within the network have final authority regarding whether their site’s data will be used or shared, on a per-project basis. These principles are intended to maximize sharing of GWAS data generated by the eMERGE Members among and between other Members as well as with the wider scientific community, and to do this without compromising data security or the confidentiality of information about individuals whose data and/or samples are used for research.
Data Sharing Responsibilities: Principal Investigators of each eMERGE Clinical Site may designate data to accomplish activities defined in eMERGE sanctioned research studies (eMERGE data) to be shared as follows: (1) distribution through dbGaP; (2) distribution within the eMERGE Network; and/ or (3) distribution to the eMERGE Coordinating Center. The eMERGE data to be shared within eMERGE will be provided only to eMERGE Network Members that have signed this Agreement. All eMERGE Network Members and the eMERGE Coordinating Center may aggregate eMERGE data from all Member sites and, with documented approval prior to each submission from the contributing site(s), submit said eMERGE data to dbGaP and/or other databases administered by the National Institutes of Health. Each eMERGE Network Member may share its own data with external collaborators without approval of the other Members. If eMERGE data received from any Member is shared externally by another Member, prior approval from the Member providing the eMERGE data must be obtained and documented. Members sharing eMERGE data externally must also ensure that each external eMERGE data recipient agrees to the same restrictions and conditions applicable to Members