Department of Health and Human Services

Redundant efforts in the NIH Data Access Committee review proces

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Genome-Wide Association Studies (GWAS) have been conducted by researchers around the globe to identify common inherited genetic variations associated with the risk of many diseases. In order to leverage its resources to ensure that the advances in genomics are available to researchers and incorporated into rigorous population-based studies, the National Institutes of Health (NIH) has instituted a policy which states that any GWAS which was funded in whole or part by the NIH must make their data available to bona fide research scientists through rapid posting to an online data repository. These data are protected behind Data Access Committees (DACs) that review the applications and determine whether the purpose is suitable and within the research limitations agreed upon by the participant when he/she enrolled in the study. Each DAC is made up of ~12 highly compensated individuals, most of whom are doctors and lawyers; and at this time, there are 13 separate DACs across the NIH, representing the different funding institutes that have sponsored the studies posting the data. Each of these DACs will receive hundreds to thousands of applications a year to use the data from their sponsored studies, which take a great deal of time and resources to review (approximately an hour or more a week per individual). To fully explore their research purpose, quite often a research applicant will apply for access to multiple datasets that fall under the purview of numerous DACs. When this happens, each of the ~12 members, of each of the DACs will have to review the exact same application to see whether it is acceptable. For example, if a researcher were to apply for access to a single dataset from each of the 13 DACs, approximately 150 individuals would have to review the exact same application. If the NIH were to create a centralized DAC made up of members from each of the individual DACs, thousands of man-hours could be saved for these very senior (highly compensated) individuals.

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Idea No. 9675