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 folded into the 21st Century Cures Act and passed in December 2016.
- Press Release: ASHG Supports Genetic Privacy Provisions in 21st Century Cures Act (December 2016)
- Letter Supporting Passage of S. 2744 (June 2016)