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
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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