Advocacy

After GINA’s passage in May 2008, ASHG responded to a Federal Register Request for Information on issues related to the law’s implementation. ASHG provided comment on definitions that would ensure the regulations keep pace with scientific and clinical advances, and clarified that data collected prior to GINA’s passage should still be covered by the law.... Read More

In 2007, geneticist James Watson was quoted regarding alleged intellectual inferiority among Africans. ASHG found the comments to be tragically misguided and without scientific foundation. Related: Statement: ASHG response to Recent Comments on Intellectual Ability (November 2007) Read More

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

In his recent book Darkness in El Dorado, journalist Patrick Tierney alleged unethical behavior by James V. Neel, a former president and ASHG Allan Award recipient. ASHG finds these allegations to be gross misrepresentations and basically false. Related: Response to Allegations against James V. Neel in Darkness in El Dorado, by Patrick Tierney (January 2002) Read More