- A bill quietly moving through Congress could have a significant impact on workplace wellness programs that use digital health tools.
Opponents say HR 1313, the Preserving Employee Wellness Programs Act, could undermine mHealth-based employee wellness programs and severely hamper digital health research by stripping away protections against the improper use of an employee’s genetic information.
Proponents of the bill, meanwhile, say the legislation would “untangle conflicting, burdensome and unnecessary rules that are currently jeopardizing the ability of employers to offer quality wellness programs and the opportunity for employees to earn significant savings on their health insurance premiums while also improving their health.”
On its face, HR 1313 would enable employers to include genetic testing as part of a workplace wellness program, as long as the tests are voluntary.
Opponents say the bill would strip away protections put in place by the Americans with Disabilities Act (ADA) and the Genetic Information Nondiscrimination Act (GINA) on the collection of digital health information about employees and their families through wellness programs.
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Democrats and mHealth advocates say the bill, if passed, would hamper workplace wellness programs, many of which promote healthy behaviors through the use of wearables, online digital health programs and social media-based gaming platforms.
The ADA, enacted in 1990, and GINA, passed in 2008, prohibit group health plans from asking members to undergo genetic testing. But the proposed bill would strip away those protections if employers made that information voluntary. Since many wellness programs include deductibles, rebates, rewards and other financial incentives for completing a health risk assessment or health screening, employees who don’t join such programs could see their premiums increase.
The bill “would undermine fundamentally the privacy provisions” of those laws, Nancy Cox, president of the American Society of Human Genetics, said in a letter to the House Committee on Education and the Workforce, which recently approved the bill on March 8 on a 22-17 party line vote, according to STAT. “It would allow employers to ask employees invasive questions about … genetic tests they and their families have undergone [and] to impose stiff financial penalties on employees who choose to keep such information private, thus empowering employers to coerce their employees” into providing their genetic information.
mHealth advocates say the bill could push employees away from these digital health programs, for fear their genetic information could be used to increase insurance premiums. In extreme cases, an employer might even fire an employer or choose not to hire a new employee based on a genetic test that might show a susceptibility to chronic disease.
Writing in the Huffington Post, Nisang Patel, a Harvard University graduate student, said the bill could have a chilling effect on digital health.
“Researchers and digital health companies rely heavily on this data to improve clinical diagnostics, develop new insights into genomics, increase the scope of preventive care, and design new treatments for otherwise difficult-to-manage diseases,” he wrote. “The increasing prevalence of fitness trackers, smartphone sensors, and the Internet of Things has paved the way for researchers at both startups and institutions to map our activity, location, habits, and interactions with our environment to clinical disease, that is, develop digital phenotypes for illness. By working backwards and identifying patterns, this may allow us to detect and prevent early stages or progression of a disease much faster and more precisely than ever before.”
“If health status is no longer protected from premium increases and possible discrimination from employers, patient health information sharing will become increasingly scarce,” Patel concluded. “Patients will want to be sure that their health data can’t be used against them when insurers determine prices and coverage status, and the uncertainty alone may provide enough inertia for them to turn away requests from startups and scientists.”
Supporters of the bill say many employers are struggling to offer workplace wellness programs that achieve actionable results because they’re hampered by regulations enacted in the wake of the Affordable Care Act.
The ERISA Industry Committee (ERIC), which advocates for employees of large employers on health, retirement and compensation policies, argues that employers are hobbled by federal legislation that curtails what data they can collect. This, in turn, keeps them from creating a wellness program that actually works.
“[W]hen the Equal Employment Opportunity Commission (EEOC) issued a new, conflicting, and more onerous and restrictive regulation governing these same programs, it caused confusion and litigation liability,” James Gelfand, ERIC’s senior vice president of health policy, said in a letter supporting the bill, referencing the EEOC’s May 2016 final rules describing how the ADA and GINA acts apply to workplace wellness programs. “Now employers are struggling to comply with the law and are threatened with fines and lawsuits, just for attempting to do the right thing and help employees improve their health and save money.”
“This legislation would return to the ACA’s original regulatory regime for employee wellness programs, ending that confusion and once more applying reasonable rules to the offering of these benefits,” Gelfand argued.
Added the American Benefits Council, which represents Fortune 500 companies, the cumulative effect of EEOC regulations on wellness programs “put at risk the availability and effectiveness of workplace wellness programs” and deprive employees of the opportunity to achieve “improved health and productivity.”
Neither side knows how HR 1313 will fare. STAT reports that it has received little fanfare because of the debate over the GOP’s efforts to repeal and replace Obamacare, but it could be folded into “a second ACA-related measure containing a grab-bag of provisions that do not affect federal spending.”