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Chunk #23 — DATA RELEASE AND PARTICIPANT PRIVACY

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The HapMap and genome-wide association studies in diagnosis and therapy.
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GWA studies produce massive data sets, often representing substantial investments of public funds and providing unparalleled opportunities for research into complex diseases. Recognizing the research potential of these data sets, and following an extended period of public comment, NIH released its Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies, recommending widespread and responsible release of GWA data to the scientific community through the Database of Genotype and Phenotype (dbGaP) of the National Center for Biotechnology Information (10, 54). Study descriptions and protocols are available in the open-access portion of the db-GaP website; individual-level data are provided through a controlled-access process consistent with participants’ informed consent. This commitment to rapid data release builds on the now well-established ethic in genomic community research projects of maximizing data access. Other GWA data access sites include the Cancer Genetic Markers of Susceptibility (CGEMS) data portal (55) and the European Genotype Archive (EGA) (56). Policies for data release have been developed collabora-tively among these projects and are quite similar. Published GWA studies and major findings are also catalogued by