Advocacy

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

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 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

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

ASHG and the American College of Medical Genetics issued a 2000 statement describing tandem mass spectrometry and its potential role in newborn screening programs. The statement describes the state of the science as well as questions to be considered in its implementation, including funding and training. Related: Statement on Tandem Mass Spectrometry in Newborn Screening... Read More