Open Access News

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Thursday, March 06, 2008

Parkinsons genome data added to NIH database

Genome-wide association study on Parkinson's disease finds public home at NIH, press release, March 4, 2008.

Data from one of the first genome-wide association studies (GWAS), which focused on Parkinsonís diseases and was funded in part by The Michael J. Fox Foundation for Parkinsonís Research (MJFF), is now being made available to researchers through the National Human Genome Research Institute (NHGRI) and the National Center for Biotechnology Information (NCBI), both of the National Institutes of Health (NIH). NHGRI hopes to speed up research by making previously unavailable GWAS data sets publicly available to the research community. ...

[The] study will be added to dbGaP, the database of Genotypes and Phenotypes operated by the National Library of Medicineís National Center for Biotechnology Information. The dbGaP database contains individual-level data on genotype (an individualís genetic makeup), and phenotype (observable traits and characteristics). ...

For researchers who want to view the ... data, dbGaP offers two levels of access. The first is open access, where certain data are available without restriction, and the second is controlled access, which requires authorization. The open-access section allows users to view study documents that do not risk identifying individual participants, such as protocols and summaries of genotype and phenotype data. The controlled-access portion of the database allows approved researchers to download individual-level genotype and phenotype data from which the study participantsí personal identifiers, such as names, have been removed. ...

Although personally identifying information is not included in the database, concern remains that it may someday be possible to identify someone based on their genetic profile. For this reason only researchers agreeing not to attempt to identify individuals in the database will be given access to the data, as outlined in NIH's Policy for Sharing of Data Obtained in NIH Supported or Conducted Genome-Wide Association Studies (GWAS) ...

See also past OAN posts on dbGaP.

Update. See also Jim Till's comments.