A bill that passed its first hurdle yesterday in Congress threatens to take away genetic privacy protections put in place with the Genetic Information Nondiscrimination Act (GINA) of 2008. H.R.1313, the “Preserving Employee Wellness Programs Act,” might instead be called the “telling on relatives” ruling.
According to GINA, employers can’t use genetic information to hire, fire, or promote an employee, or require genetic testing, and health insurers can’t require genetic tests nor use results to deny coverage. The law clearly defines genetic tests – DNA, RNA, chromosomes, proteins, metabolites – and genetic information –genetic test results and family history of a genetic condition.
Nancy J. Cox, PhD, ASHG [wikipedia.org] president, in a letter to the U.S. House Committee on Education and the Workforce, provides a frightening overview:
Human Chromosomes“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.”
http://blogs.plos.org/dnascience/2017/03/09/saving-gina-is-genetic-privacy-imperiled/
Force employees to take DNA tests for bosses? We've got a new law to make that happen, beam House Republicans - Give us your genes or pay 50% more for company healthcare:
https://www.theregister.co.uk/2017/03/10/us_legislation_forcing_employees_genetic_info/ [theregister.co.uk]
From the Wikipedia page of Virginia Foxx [wikipedia.org] who introduced this bill:
Preserving Employee Wellness Programs Act (H.R. 1313; 115th Congress) – Foxx introduced this legislation that among other things, eliminates the genetic privacy protections of the Genetic Information Nondiscrimination Act of 2008 (Public Law 110–233) and which allows 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.
In summary: "We will make it too expensive for you to not give us your private data".
Goes to show even more how much this private data is worth, namely a lot!