Posted By: Sara Cullinan, PhD, Deputy Editor, AJHG SC: What prompted you to start working on this project? CG: Everyone on the team is involved in studying the ethical, legal, and social implications (ELSI) of direct-to-consumer genetic testing, and we’ve been paying attention to stories in the media about individuals who have made surprising family... Read More
ASHG recently submitted a response to the NOT-OD-22-029 Request for Information (RFI) from the National Institutes of Health (NIH) pertaining to its Genomic Data Sharing Policy (GDS policy). The GDS policy regulates the expectations and procedures for researchers who generate genomic data as part of their NIH-funded research, as well as for researchers who wish to gain access... Read More
On January 26, 2022, The National Institute of Standards and Technology (NIST) National Cybersecurity Center of Excellence (NCCoE) hosted a virtual workshop on the Cybersecurity of Genomic Data. The event had 593 attendees and 20 presenters, including ASHG 2021 President Gail Jarvik and NHGRI Program Director Heidi Sofia. The workshop represented a collaboration of experts... Read More
Posted By: Sara Cullinan, PhD, Deputy Editor, AJHG SC: What prompted you to start working on this project? AB: This project was truly a collaboration from conception to completion. First, disease-associated genetic loci are often in non-coding regions of the genome, and thus do not immediately point to a disease gene or mechanism of action.... Read More
Posted By: Sara Cullinan, PhD, Deputy Editor, AJHG What prompted you to start working on this project? SS: For a few years now, I have been thinking about Biobank-scale methods that can allow us to learn about aspects of the genetic architecture (e.g. heritability) of complex traits from millions of genomes. A major challenge in... Read More