dbGaP Data Access Requests: A Call for Greater Transparency

See allHide authors and affiliations

Science Translational Medicine  14 Dec 2011:
Vol. 3, Issue 113, pp. 113cm34
DOI: 10.1126/scitranslmed.3002788
  • Fig. 1. Requested and approved.

    Total number of DARs approved by each DAC. Shown in parentheses is the number of primary studies for which each DAC is responsible. [NHGRI, National Human Genome Research Institute; NHLBI, National Heart, Lung, and Blood Institute; JAAMH, Joint Addiction, Aging, and Mental Health; CGEMS, Cancer Genetic Markers of Susceptibility; NEI, National Eye Institute; NIDDK, National Institute of Diabetes and Digestive and Kidney Disease; NCI, National Cancer Institute; NIGMS, National Institute of General Medical Sciences; NIAID, National Institute of Allergies and Infectious Diseases; JARDE, Joint NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases)–NIDCR (National Institute of Dental and Craniofacial Research) DAC]

  • Fig. 2. Fueling new research.

    Total numbers of DARs approved per type of proposed secondary research use (with categories as defined in table S2).

  • Table 1.

    Distribution of proposed secondary research use by investigator affiliation (n = 2724 DARs).

    AffiliationDiscoveryMethodsReplicationControlsNot listedPopulation structureQuality control
    U.S. academic37%30%14%13%4%1%0%
    U.S. nonprofit38%12%25%11%8%0%5%
    U.S. for-profit41%16%29%7%3%4%0%
    Non-U.S. academic43%29%18%2%5%4%1%
    Non-U.S. nonprofit33%10%25%29%4%0%0%
    Non-U.S. for-profit47%0%35%6%12%0%0%

Additional Files

  • Supplementary Material for:

    dbGaP Data Access Requests: A Call for Greater Transparency

    Lorelei Walker, Helene Starks, Kathleen M. West, Stephanie M. Fullerton*

    *Corresponding author. E-mail: smfllrtn{at}

    Published 14 December 2011, Sci. Transl. Med. 3, 113cm34 (2011)
    DOI: 10.1126/scitranslmed.3002788

    This PDF file includes:

    • Materials and Methods
    • References
    • Table S1. Top ten institutions by type and non-U.S. countries with granted DARs.
    • Table S2. Classification scheme for proposed secondary uses of dbGaP data.

    [Download PDF]

Stay Connected to Science Translational Medicine

Navigate This Article