Advocacy

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

American Society of Human Genetics is committed to protecting the rights and welfare of those who participate in genetics and genomics research. In separate statements, the Society examined different aspects of informed consent, including the use of family medical history of research participants, and the use of collected samples and proper disposition of samples and... Read More

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

Genetic information about an individual reveals genetic risk information about both the individual and other family members. ASHG issued a statement in 2000 considering the importance of family medical history in genetics research and its balance with ensuring the genetic privacy of research participants’ relatives, and one in 1998 commenting on this balance in the... Read More

ASHG members have interest in many questions raised in public discussion of the use of stem cells in biomedical research. ASHG supports federally funded stem cell research and the appointment of an advisory body to foster and maintain public confidence in this area of research. Related: ASHG Statement on Stem Cell Research (August 2001) ASHG... Read More