Advocacy

The responsible use of large-scale data to advance genetics and genomics research incorporates protections preserving the confidentiality of personal genetic information. ASHG asserts core privacy principles should be applied to all research, regardless of the funding source. Related: AJHG Perspective: Advancing Research and Privacy: Achievements, Challenges, and Core Principles (September 2019) Press Release: ASHG Asserts... Read More

Genetic counselors are a key part of the delivery of genetic testing in healthcare across the United States, and it is essential that their services are accessible to patients. ASHG strongly supports the Access to Genetic Counselor Services Act. Related: ASHG News: H.R. 7083: Improving Access to Genetic Counseling (December 2018) Letter to House Leaders... Read More

In 2019, ASHG issued a statement outlining whether, and to what extent, there is a responsibility to recontact genetic and genomic research participants when new findings emerge that suggest their genetic information should be interpreted differently. Related: Webinar: Exploring the Responsibility to Recontact (June 2019) Position Statement: Responsibility to Recontact Research Participants after Reinterpretation of... Read More

ASHG supports policies that enable a productive and safe working environment for all scientific professionals. The Society is committed to promoting a harassment-free workplace for geneticists, and believes that science can only achieve its goals when we are able to fully engage the minds, talent, and perspectives of all who wish to participate. Related: Letter... Read More

Protections against genetic discrimination advance genetics research and the clinical use of genetics, as well as ensure the ethical use of genetic data. Ten years after the passage of the Genetic Information Nondiscrimination Act (GINA), ASHG remains a staunch advocate for GINA’s strong implementation and for other laws that enhance protections for the public. Related:... Read More