(ExtremeTech) A new bill introduced by Virginia Foxx (R-NC) and approved by the House Ways and Means Committee would allow corporations to force employees to undergo genetic testing — and then share those results with third parties. In theory, this is already illegal, thanks to a 2008 law known as GINA. This type of behavior is also regulated by the Americans With Disabilities Act (ADA).
The new House bill, HR 1313, gets around these issues by preemptively declaring that workplace wellness programs offered in conjunction with an employer’s sponsored health care plan shall be considered to be in compliance with GINA, the ADA, and other workplace protections. Given that the relevant section of GINA (section 202(b)(2)) specifically states that it shall be unlawful for employers to gather genetic information on employees without the express permission and consent of the employee in question, the GOP just wrote a privacy-shredding exception into a bill and then quietly passed that bill through committee.
Workplace wellness programs have been controversial because they largely don’t seem to work, but remain popular as a method of pushing healthcare costs onto employees. Historically, companies have been allowed to offer these programs (and to enforce fiscal penalties on employees that refuse to meet their goals). But HR 1313 goes farther than simply allowing genetic profiling of employees because an employer offers insurance coverage. The bill actually stipulates that any company with any program with a workplace wellness component can mandate genetic collection whether it provides insurance or not. It also states:
[T]he collection of information about the manifested disease or disorder of a family member shall not be considered an unlawful acquisition of genetic information with respect to another family member as part of a workplace wellness program. [emphasis added]
Under the GOP’s bill, which has already passed through one committee vote with 22 Republicans voting for it and 17 Democrats against, it would be explicitly legal for companies to collect genetic information on your family members. It’s also legal for them to share that information with third parties, in complete and total abrogation of the privacy protections passed in 2008.
The American Society for Human Genetics has blasted the bill:
H.R.1313 would effectively repeal these protections by allowing employers to ask employees invasive questions about their and their families’ health, including genetic tests they, their spouses, and their children may have undergone. GINA’s requirement that employees’ genetic information collected through a workplace wellness program only be shared with health care professionals would no longer apply.
HR 1313 is a travesty. It guts previous protections passed by Congress intended to protect the most fundamentally personal information any human possesses — their own genetic code. It would allow corporations to share that data with third parties for analysis without stripping it of identifying information (GINA forbids this, but 1313 supersedes GINA). It would allow companies to levy fines up to 30% of the cost of health premiums on the employees who fail to cooperate. The ASHG notes that the average premium cost for employees in 2016 was $18,142, meaning families could face an additional $5,443 in premium costs per year for refusing to hand over their genetic and health information.