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Chunk #26 — DATA RELEASE AND PARTICIPANT PRIVACY

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The HapMap and genome-wide association studies in diagnosis and therapy.
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yes

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Substantial participant protections are also applied at the dbGaP data-user level through a process managed by a Data Access Committee (DAC) composed of senior NIH staff. Investigators interested in obtaining controlled-access dbGaP data submit a Data Access Request, cosigned by their institution, constituting their agreement to abide by the principles and practices detailed in the NIH GWA study policy. These include keeping the data secure; using them only for the approved research purposes; acknowledging NIH policies on publications and intellectual property (IP); and submitting periodic reports on data use. Data users also agree not to distribute individual-level data in any form to any third parties (other than their own research staff who have agreed to the terms of access), nor to attempt to identify individual study participants.