Advocacy

Media Contact: Nalini Padmanabhan ASHG Communications Manager 301.634.7346 press@ashg.org For Immediate Release Wednesday, July 1, 2015 9:00 am U.S. Eastern Time (UTC-05:00) Geneticist-Advocate to Receive Award at ASHG 2015 Annual Meeting BETHESDA, MD – The American Society of Human Genetics (ASHG) has named R. Rodney Howell, MD, Professor in the Department of Pediatrics, Chairman Emeritus... 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

After GINA’s passage in May 2008, ASHG responded to a Federal Register Request for Information on issues related to the law’s implementation. ASHG provided comment on definitions that would ensure the regulations keep pace with scientific and clinical advances, and clarified that data collected prior to GINA’s passage should still be covered by the law.... Read More