Advocacy

In 2015, ASHG issued a position statement on ethical, legal, and psychosocial implications of genetic testing in children and adolescents. Published in The American Journal of Human Genetics, the statement aims to guide approaches to genetic testing for children in the research and clinical contexts. Related: Infographics: Pediatric Genetic Testing (March 2016) Points to Consider:... Read More

S. 2744, the Genetic Research Privacy Protection Act, was introduced in the Senate in 2016. This bill, supported by ASHG, would guard against the inappropriate use of the Freedom of Information Act to gain access to research participants’ genetic information, and would build on existing privacy protections by strengthening Certificates of Confidentiality. Its provisions were... Read More

H.R.1313, the Preserving Employee Wellness Programs Act, a 2017 bill, would fundamentally undermine privacy provisions of the Genetic Information Nondiscrimination Act (GINA) and the Americans with Disabilities Act (ADA). Related: Group Letter to House Leaders Opposing H.R. 1313 (March 2017) Letter to House Leaders Opposing H.R. 1313 (March 2017) Press Release: ASHG Opposes H.R. 1313,... Read More

Following rapid innovation in non-invasive prenatal testing (NIPT), ASHG and the European Society of Human Genetics published a joint statement in the European Journal of Human Genetics that addressed the responsible use of these tests across conditions and how they might fit with existing approaches. Related: Statement: Non-invasive Prenatal Testing for Aneuploidy and Beyond: Challenges... Read More

In 2015, the U.S. Food and Drug Administration (FDA) invited comment on its draft guidance for the regulatory oversight of laboratory-developed tests (LDTs). With a focus on genetic and genomic testing, ASHG submitted comments on the proposed regulatory oversight of such tests. Related: Comments Submitted in Response to FDA’s Draft Guidance: Framework for Regulatory Oversight... Read More