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A Mechanism for Controlled Access to GWAS Data: Experience of the GAIN Data Access Committee
Erin M. Ramos, Corina Din-Lovinescu, Ebony B. Bookman, Lisa J. McNeil, Carl C. Baker, Georgy Godynskiy, Emily L. Harris, Thomas Lehner, Catherine McKeon, Joel Moss, Vaurice L. Starks, Stephen T. Sherry, Teri A. Manolio, Laura Lyman Rodriguez The American Journal of Human Genetics Volume 92, Issue 4, Pages (April 2013) DOI: /j.ajhg Copyright © 2013 The American Society of Human Genetics Terms and Conditions
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Figure 1 Overview of the GAIN Data-Access Review Process
After a researcher (requestor) submits a PR via dbGaP, the PR is reviewed and signed by the signing official at the requestor’s institution. The PR undergoes a preliminary review by the GAIN DAC staff before being sent to the GAIN DAC for a vote. If the PR is approved, the requestor (approved user) can access data sets from dbGaP. If the PR is disapproved or a revision to the PR is requested, the requestor can revise and resubmit the PR to begin the evaluation process again. The American Journal of Human Genetics , DOI: ( /j.ajhg ) Copyright © 2013 The American Society of Human Genetics Terms and Conditions
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Figure 2 Summary of Key Aspects of Governance for Controlled Access to GAIN Data Sets through dbGaP Prior to the implementation of the GWAS policy, both the GAIN Steering Committee and the Advisory Committee to the Director (ACD) Working Group on Participant and Data Protection (ACD PDP) provide oversight and input on policy questions related to GAIN data use, privacy concerns, and other topics, as appropriate. Once the governance structure for the GWAS policy is operational, oversight of GAIN is integrated with the other NIH DACs (only 5 of the 13 other DACs are shown here). The American Journal of Human Genetics , DOI: ( /j.ajhg ) Copyright © 2013 The American Society of Human Genetics Terms and Conditions
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