April 05, 2016

Senators Warren and Enzi Introduce Bipartisan Bill to Strengthen Genetic Privacy Protections for Research Participants

Fact Sheet (PDF)
Bill Text (PDF)

Washington, DC – United States Senators Elizabeth Warren (D-Mass.) and Mike Enzi (R-Wyo.) today introduced the bipartisan Genetic Research Privacy Protection Act, which would strengthen privacy protections for the genetic information of medical research participants.

Federal agencies as well as research institutions maintain large databases of genetic information. It also is now possible to use genetic information to identify individuals and to learn information about their health and the health of their family members. This presents important privacy concerns, as the privacy laws have not been updated to reflect the current state of science.

“To help to bring forward the next generation of precision medicine, researchers are collecting more and more genetic information. When that genetic information is stored at our nation’s research institutions, families should have complete confidence that it will remain private,” Warren said. “The bipartisan Genetic Research Privacy Protection Act establishes key protections for the privacy of families’ genetic information and takes step to ensure privacy in the future as science advances.”

“As our scientific capabilities evolve, so should our privacy laws to ensure that Americans who volunteer to participate in medical research can trust that their information is protected,” Enzi said. “I was proud to work on the Genetic Information Nondiscrimination Act in 2008 and have championed this issue. There is almost nothing more personal than an individual’s genetic information and by strengthening the privacy protections, we not only provide security for those participating in the research, but help secure the future of advanced medical research.”

The Genetic Research Privacy Protection Act would provide stronger protections to ensure that personal genetic information held by federal agencies cannot be made public, and to guarantee confidentiality by federally-funded researchers.  This legislation builds on the important genetic information protections established by the Genetic Information Nondiscrimination Act of 2008 (GINA), championed by Senator Enzi and the late Senator Ted Kennedy. GINA prohibits discrimination in health insurance and employment on the basis of genetic information.

A fact sheet about the Genetic Research Privacy Protection Act is available here, and a copy of the bill text is available here.