With the rise of direct-to-consumer (DTC) genetic tests – tests that are ordered directly by consumers and whose results are reported without a health provider’s involvement – ASHG issued a statement in 2007 on such tests that make health-related claims or directly affect health care decision making. The statement includes recommendations to ensure transparency, provider... 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
ASHG has supported efforts to prevent genetic discrimination since the 1990s, including the Genetic Information Nondiscrimination Act (GINA), enacted in 2008. One such early bill was Senate Bill 318, the Genetic Nondiscrimination and Health Insurance and Employment Act. Related: ASHG Board Endorses the Genetic Nondiscrimination and Health Insurance and Employment Act (December 2001) Read More
In 2000, recognizing the involvement of ASHG members in gene therapy research and implementation, ASHG issued a statement commenting on the need for rigorous research and consideration of patient interests. Related: Statement on Gene Therapy (August 2000) Read More
In April 2000, the U.S. Secretary’s Advisory Committee on Genetic Testing issued a set of recommendations for the oversight of genetic testing. ASHG voiced general agreement with the recommendations, and provided comments from the perspective of geneticists to further clarify and refine them. Related: Comments on SACGT Preliminary Recommendations on Oversight of Genetic Testing (May... Read More