The National Institutes of Health (NIH) has issued a notice in its Guide to Grants and Contracts seeking public comment on a proposed update to the data management of genomic summary results under the NIH Genomic Data Sharing (GDS) Policy. The proposed update to the data management practices would help support NIH's goals to promote scientific advances and protect research participants' privacy interests by allowing genomic summary results to be provided via a public, rapid-access model.
The American Society of Human Genetics and ten other organizations just issued a policy statement on germline genome editing in humans in the journal Cell on August 3rd.. Germline editing is adding, removing or replacing parts of DNA in the cells that will get passed down to the next generation. Want to learn more about genome editing? Check out our new resource here!"
To make information about clinical trials widely available to the public, the U.S. Department of Health and Human Services (HHS) has issued a final rule specifying requirements for registering and reporting summary results information to ClinicalTrials.gov. The new rule expands the legal requirements for submitting results. NIH also has issued a complementary policy for submitting summary results information for all NIH-funded clinical trials.
While generating large amounts of medical and genomic data may improve health, questions about access and use remain. To address these challenges, an NHGRI-funded project titled, Building the Medical Information Commons: Participant Engagement and Policy, held its first advisory committee meeting March 2-3 in Houston.