Genetic Privacy

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

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