Friday, March 10, 2017

Brief Blog: Could GINA's Genetic Privacy Protections Change?

This week, a flurry of articles on an obscure legislation proposal that could chip away at GINA's protections regarding genetic privacy in the workplace and with health insurance.

See coverage at PLOS.ORG here, at Genomweb here, at STAT here, at Dark Daily, here.

STAT writes,
A little-noticed bill moving through Congress would allow companies to require employees to undergo genetic testing or risk paying a penalty of thousands of dollars, and would let employers see that genetic and other health information.
Giving employers such power is now prohibited by legislation including the 2008 genetic privacy and nondiscrimination law known as GINA. The new bill gets around that landmark law by stating explicitly that GINA and other protections do not apply when genetic tests are part of a “workplace wellness” program.
The PLOS article quotes from a letter from the President of the American Society for Human Genetics to the Hill.
Nancy J. Cox, PhD, ASHG president, in a letter to the U.S. House Committee on Education and the Workforce, provides a frightening overview:

“If enacted, this legislation would undermine fundamentally the privacy provisions of the Genetic Information Nondiscrimination Act (GINA) and the Americans with Disabilities Act (ADA). It would allow employers to ask employees invasive questions about their and their families’ health, as well as genetic tests they and their families have undergone. It would further allow employers to impose stiff financial penalties on employees who choose to keep such information private, thus empowering employers to coerce their employees into providing their health and genetic information.”