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
Published: January 29, 2020, 9:00 a.m. U.S. Eastern Time Media Contact: Kara Flynn or Nalini Padmanabhan, 301.634.7346, press@ashg.org Respondents Want Confidence in Data Privacy, Have Some Knowledge Gaps ROCKVILLE, Md. – As genetics and genomics knowledge expands rapidly throughout research, medicine, and society, Americans are excited and optimistic about this area of research and its emerging health... 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
Tests for Genetic Diseases There are many different tests available for genetic diseases. Some people use direct-to-consumer testing to see whether they are at risk for certain genetic diseases. Genetic testing is also available through a genetic specialist or your primary care physician. In the medical setting, your doctor will first determine if you would... Read More
ASHG supports DNA profiling as a law enforcement tool to identify criminals and exonerate the innocent. The Society believes, however, that the use of DNA in those contexts must respect the public’s right to privacy and that DNA collection should be limited to those convicted of or reasonably suspected of having committed a serious crime.... Read More