Data sharing

ASHG recently responded to a select number of questions in a Request for Information (RFI) from the White House Office of Science and Technology Policy (OSTP) on the National Biotechnology and Biomanufacturing Initiative. OSTP released this RFI to seek public input on how advances in biotechnology and biomanufacturing can help support a strong bioeconomy. The insights... 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

The responsible use of large-scale data to advance genetics and genomics research incorporates protections preserving the confidentiality of personal genetic information. ASHG asserts core privacy principles should be applied to all research, regardless of the funding source. Related: AJHG Perspective: Advancing Research and Privacy: Achievements, Challenges, and Core Principles (September 2019) Press Release: ASHG Asserts... Read More

In 2016, ASHG responded to the NIH’s proposed policy for the sharing of data obtained from NIH-supported or -conducted genome-wide association studies (GWAS). ASHG supports broad access to phenotypic and genotypic data to advance medical research, and supported the proposed policy with changes. Related: Comments to NIH on Genome-Wide Association Studies (November 2006) Read More