HR 1313 would allow employers to force workers to disclose their genetic information
On 8 March 2017, the House Committee on Education and and the Workforce moved forward with a bill that has been criticized by both geneticists and disability advocates for allegedly placing the privacy of workers' genetic records at risk. H.R. 1313 states that employers may provide additional insurance premium discounts to workers who take part in their companies' voluntary wellness programs. Once enrolled, the bill says, businesses are allowed to collect 'information about the manifested disease or disorder of a family member' of participating employees. The bill, which was sponsored by committee chair Rep. Virginia Foxx (R-NC), does not in and of itself require employees to enroll in such programs. But it notes that according to the Patient Protection and Affordable Care Act, employers could reduce annual health insurance premiums by up to 50 percent for employees who did take part. A spokesperson for the committee told us via e-mail that such programs would continue to be voluntary if the bill became law: If a worker chooses to voluntarily participate in an employee wellness program, they would then typically participate in a health risk assessment. This has long been the case for employee wellness programs, including employee wellness programs promoted by the Affordable Care Act, and it would continue to be true for employee wellness programs under H.R. 1313. A May 2016 ruling by the Equal Employment Opportunity Commission (EEOC) stated that premiums could be cut by 30 percent for individuals and 60 percent for couples who enrolled in such programs. But under the new bill, premiums could be cut by up to 50 percent. The EEOC has also sued employers accused of imposing penalties on workers who refused to join their wellness programs. The American Society of Human Genetics criticized the bill, saying that it would 'fundamentally undermine' the privacy protections covered by the the Americans with Disabilities Act (ADA) and Genetic Information Nondiscrimination Act (GINA): A key component of ADA and GINA is that they prevent workers and their families from being coerced into sharing sensitive medical or genetic information with their employer. For GINA, genetic information encompasses not only employees' genetic test results but also their family medical histories. 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. National Council on Disability chair Clyde Terry said in a letter to Foxx and the committee's ranking member, Rep. Robert C. Scott (D-VA) that the increase in potential premium cuts for employees in their workplace programs 'opens the door to discrimination by employers.' Terry wrote: NCD had urged the EEOC to promulgate that regulation and was appreciative of the agency's attempt to allow employers to carry out effective wellness programs while limiting the potential for coercion that could lead employees to submit to medical examinations and inquiries regarding information that they otherwise would have preferred to keep confidential. The reward permitted under this legislation seem to tip that delicate balance. The GINA bill, which was passed in 2008, also prohibits employers from using genetic information as the basis for hiring, terminating, or promoting their employees. But both that measure and the ADA contain exceptions for wellness programs. Vendors operating the programs are often not required to follow the Health Insurance Portability and Accountability Act (HIPAA), which restricts the information doctors and hospitals can share regarding their patients. In a statement supporting the bill, GOP Rep. Bradley Byrne of Alabama accused the EEOC of trying to 'undermine' efforts to lower health care costs through the use of wellness programs: These plans are not only effective, but they are also popular and widely supported by employers and employees. A recent survey showed more than 60 percent of all employers offer their employees the option of enrolling in a wellness program. And this free-market health care solution has long received bipartisan support from Congress. A 2015 study found that 81 percent of U.S. companies with more than 200 employees offer wellness programs, while 49 percent of companies with smaller workforces do the same. The bill has been forwarded to the House Ways and Means Committee.Arturo Garcia American Society of Human Genetics Genetic Information Non-Discrimination Act House Committee on Education and and the Workforce Sources American Society of Human Genetics. 'ASHG Opposes H.R.1313, the Preserving Employee Wellness Programs Act Bill Would Undermine Genetic Privacy Protections.' 8 March 2017. Equal Employment Opportunity Commission. 'Genetic Information Discrimination.' Mole, Beth. 'Wellness Programs Strong-Arm Employees Into Giving Up Health Info, Suit Says.' Ars Technica. 26 October 2016. Hancock, Jay. 'Workplace Wellness Programs Put Employee Privacy at Risk.' Kaiser Health News. 28 September 2015. Terry, Clyde. 'NCD Letter to House Committee on Education and the Workforce on the H.R. 1313, 'Preserving Employee Wellness Programs Act.' National Council on Disability. 7 March 2017. Henry J. Kaiser Family Foundation. '2015 Employer Health Benefits Survey.' 22 September 2015.
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