Recently, NHGRI hosted a two-day workshop on the topic of sharing summary statistics from genomic data. Participants were asked to weigh the benefits and risks of sharing this information, given current perspectives from researchers and participant communities about privacy and data sharing. Workshop participants emphasized that summary statistics represent valuable information for use in scientific and clinical discovery. Summary statistics for thousands of genomic research studies are available from the Database of Genotypes and Phenotypes (dbGaP), but only via ‘controlled access’ due to an NIH policy change in 2008. The NHGRI workshop was convened to initiate a contemporary re-consideration of this policy and to provide recommendations for how NHGRI should proceed with regards to the sharing of such summary-level information from genomic studies. Workshop participants noted the need for public engagement about the risks and benefits of sharing this information, and for appropriate consideration of any risks related to vulnerable populations or sensitive phenotypes. A workshop report has now been released (see genome.gov/27566089), which enumerates key findings.
Excerpt from the newsletter “The Genomics Landscape: A monthly update from the NHGRI Director – September 2016”