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Is it possible to withdraw from the GAIN Database any data from participants who have subsequently withdrawn their consent for genotyping or data distribution?

April 26, 2017Consent Data database gain Genotyping participants possible subsequently withdraw withdrawn

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Is it possible to withdraw from the GAIN Database any data from participants who have subsequently withdrawn their consent for genotyping or data distribution?

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It is possible to remove data from the GAIN Database within dbGaP if the Contributing Study Investigator provides the unique sample code linked with the individual requesting withdrawal. However, once a dataset in dbGaP has been accessed by researchers (using the appropriate access methods described in Question E1 above) it will not be possible to fully withdraw data from further GAIN-related research use.