Genetic Privacy

Protecting Genetic Privacy in Law Enforcement

Protecting Genetic Privacy in Law Enforcement

ASHG supports DNA profiling as a law enforcement tool to identify criminals and exonerate the innocent. The Society believes, however, that the use of DNA in those contexts must respect the public’s right to privacy and that DNA collection should be limited to those convicted of or reasonably suspected of having committed a serious crime.... Read More

ASHG Supports Genetic Privacy Provisions in 21st Century Cures Act

ASHG Supports Genetic Privacy Provisions in 21st Century Cures Act

Media Contact: Nalini Padmanabhan ASHG Communications Manager 301.634.7346 press@ashg.org For Immediate Release Wednesday, December 7, 2016 2:45 pm U.S. Eastern Time BETHESDA, MD – The American Society of Human Genetics (ASHG) commends Congress for strengthening privacy protections for genetics research participants as part of the 21st Century Cures Act (H.R.34) passed on December 7. These... Read More

Supporting Research Participant Privacy

Supporting Research Participant Privacy

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

Protecting Genetic Privacy in the Workplace

Protecting Genetic Privacy in the Workplace

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

Considering Family Privacy in Genetic Research and Medicine

Considering Family Privacy in Genetic Research and Medicine

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