Protecting Participants, Empowering Researchers: Providing Access to Genomic Summary Results

Guest post by Carrie Wolinetz, Ph.D., NIH Associate Director for Science Policy, and  Eric Green, M.D., Ph.D., Director of the National Human Genome Research Institute, originally released on the Under the Poliscope blog Today, we are updating the way we manage data related to the NIH Genomic Data Sharing Policy to again allow unrestricted access to genomic summary results for most of the studies we support in order to advance health or further research purposes.  These summary results are importantly distinct from other genomic research data, most notably in that they do not include individual-level information. Instead, these results come from analyzing pooled genomic data from multiple individuals together to generate a statistical result for the entire dataset. Such information can be a powerful tool for helping researchers determine which genomic variants potentially contribute to a disease or disorder. In 2008, researchers raised concerns that statistical methods using genomic summary results could be used to determine if an individual participated in a specific research study (if the researcher had access to the individual’s genomic data).  In response, we decided that while we assess the state of the science and any potential risks to research participants, NIH officially would move genomic summary results from unrestricted access (i.e., open and public) to controlled-access.  While we were employing this controlled-access model, genomic summary results con...
Source: NIH Extramural Nexus - Category: Research Authors: Tags: blog Open Mike genomic data sharing Open Access Patient Privacy Source Type: funding