Congress acts to protect the most personal data – genetic information

Washington, D.C. - December 7, 2016 (The Ponder News) -- Congress passed the 21st Century Cures Act, which includes important new protections for genetic privacy, which were top priorities of Senator Mike Enzi, R-Wyo.

The bill strengthens privacy protections around the collection of genetic information for medical research participants. As federal agencies and other groups continue advancements in scientific health research, their collection of individual’s personal genetic information continues to grow larger and larger.

“There have been amazing advancements in genetic research – personalized medicine and the truly remarkable work being done by researchers across the country brings us closer than ever to cures for life threatening diseases. But with those developments come new threats to the genetic privacy of research participants,” Enzi said, “I am proud to have the next generation of genetic privacy protections put into law to ensure that this vital information is handled correctly and securely. I have worked on this issue for close to a decade and I am excited to see these 21st century privacy protections head to the president’s desk to be signed into law.”

Senator Enzi has been a leader on this issue in the Senate, having been an original sponsor of the Genetic Information Nondiscrimination Act of 2008 (GINA). Along with federal agencies and research institutions maintaining 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. The new legislation 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.

The 21st Century Cures Act, which the Senate and House passed earlier this week with overwhelming support, would also bring lifesaving drugs and devices to market more quickly, as well as boost cancer and Alzheimer’s disease research, provide grants to states to fight opioid abuse.