ASHG News

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

Addressing Tandem MS in Newborn Screening

Addressing Tandem MS in Newborn Screening

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

Advising on Oversight of Genetic Testing

Advising on Oversight of Genetic Testing

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

Advising on Patenting of Genetic Material

Advising on Patenting of Genetic Material

In 2000, the U.S. Patent and Trademark Office released revised interim guidelines that raised the bar for patent eligibility of nucleic acid sequences. ASHG supports the PTO’s new standard of “specific, substantial and credible” utility in its revised guidelines, and suggested an extension of this standard to keep pace with current and planned research. Related:... Read More

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