Statement Archive

Advising on GWAS Data Sharing

Advising on GWAS Data Sharing

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

Responding to Allegations Against James V. Neel

Responding to Allegations Against James V. Neel

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

Supporting Genetic Nondiscrimination Since the 1990s

Supporting Genetic Nondiscrimination Since the 1990s

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

Engaging with Research Participants

Engaging with Research Participants

In 1999, ASHG and the Genetic Alliance organized a workshop designed to examine the conduct of human genetics research. Workshop attendees identified themes related to research conduct, proposed a new model of relationship between research and participants, and developed a consensus statement and recommendations to advance the new model. Related: Genetic Lay Advocacy Groups: Significant... Read More

Driving Gene Therapy Forward

Driving Gene Therapy Forward

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

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