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. 2011 Dec 14;3(113):113cm34.
doi: 10.1126/scitranslmed.3002788.

dbGaP data access requests: a call for greater transparency

Lorelei Walker  1 , Helene Starks, Kathleen M West, Stephanie M Fullerton
Affiliations

dbGaP data access requests: a call for greater transparency

Lorelei Walker et al. Sci Transl Med. .

Abstract

The scientific and public health benefits of mandatory data-sharing mechanisms must be actively demonstrated. To this end, we manually reviewed 2724 data access requests approved between June 2007 and August 2010 through the U.S. National Center for Biotechnology Information database of genotypes and phenotypes (dbGaP). Our analysis demonstrates that dbGaP enables a wide range of secondary research by investigators from academic, governmental, and nonprofit and for-profit institutions in the United States and abroad. However, limitations in public reporting preclude the tracing of outcomes from secondary research to longer-term translational benefit.

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Figures

Fig. 1
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; 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; JARDE, Joint NIAMS (National Institute of Arthritis and Musculoskeletal and Skin Diseases)–NIDCR (National Institute of Dental and Craniofacial Research) DAC; NIAID, National Institute of Allergies and Infectious Diseases]
Fig. 2
Fig. 2. Fueling new research
Total numbers of DARs approved per type of proposed secondary research use (with categories as defined in supplementary table S2).
See this image and copyright information in PMC

References

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