FAQ: Sharing Genomic Data

  1. Can CHOP certify a data sharing plan that includes data/specimens obtained from an outside investigator or a repository?

    It depends. The CHOP IRB must be able to verify that the submission of data to a NIH-designated repository and subsequent sharing for research purposes is consistent with the original informed consent document. When the data/specimens were obtained from studies not originally performed at CHOP, the IRB would need evidence that the consent forms included appropriate language permitting sharing for future research. In addition, the originating site would need to provide evidence that it had tracked each subject's choices regarding sharing for future use.