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
In 2015 and 2016, ASHG submitted comments to the U.S. Food and Drug Administration (FDA) on two related proposed regulations for Next Generation Sequencing (NGS)-based in vitro diagnostics. Appreciative of being engaged in the process, ASHG submitted comments to further inform and clarify the issue. Related: Comments on “Use of Standards in FDA Regulatory Oversight... Read More
S. 2744, the Genetic Research Privacy Protection Act, was introduced in the Senate in 2016. This bill, supported by ASHG, would guard against the inappropriate use of the Freedom of Information Act to gain access to research participants’ genetic information, and would build on existing privacy protections by strengthening Certificates of Confidentiality. Its provisions were... Read More
H.R.1313, the Preserving Employee Wellness Programs Act, a 2017 bill, would fundamentally undermine privacy provisions of the Genetic Information Nondiscrimination Act (GINA) and the Americans with Disabilities Act (ADA). Related: Group Letter to House Leaders Opposing H.R. 1313 (March 2017) Letter to House Leaders Opposing H.R. 1313 (March 2017) Press Release: ASHG Opposes H.R. 1313,... Read More
ASHG reaffirms its commitment to the fundamental principle of reproductive freedom and unequivocally declares its opposition to coercive efforts to restrict that freedom based on the misuse of genetic information. Related: Statement on Eugenics and the Misuse of Genetic Information to Restrict Reproductive Freedom (February 1999) Read More