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
Protections against genetic discrimination advance genetics research and the clinical use of genetics, as well as ensure the ethical use of genetic data. Ten years after the passage of the Genetic Information Nondiscrimination Act (GINA), ASHG remains a staunch advocate for GINA’s strong implementation and for other laws that enhance protections for the public. Related:... 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
In 2016, the Parliament of Canada debated bill S-201, the Genetic Non-Discrimination Act, which would ensure that all Canadians can benefit from genetics-based clinical advances without fear of genetic discrimination. ASHG has long supported the establishment of strong protections against genetic discrimination worldwide, and as such, advocated in favor of S-201. The bill was signed... Read More
ASHG supports state licensure of certified genetic counselors to help ensure that the public has access to genetic and genomic services provided by qualified health professionals. The rapidly expanding use of genomics in healthcare decisions will increase the need for qualified genetics professionals, and genetic counselors play an important role in treating patients and families.... Read More