Employees who decline genetic testing could face penalties under proposed bill

Employers could impose hefty penalties on employees who decline to participate in genetic testing as part of workplace wellness programmes in the US. Photo / 123RF

Employers could impose hefty penalties on employees who decline to participate in genetic testing as part of workplace wellness programmes if a bill approved by a House committee this week becomes law in the United States.

Employers, in general, don't have that power under existing federal laws that protect genetic privacy and nondiscrimination. But a bill passed Wednesday by a House committee would allow employers to get around that if the information is collected as part of workplace wellness programs.

Workplace wellness programs -- which offer workers a variety of carrots and sticks to monitor and improve their health, such as lowering cholesterol -- have become increasingly popular among companies. Some offer discounts on health insurance to employees who complete health-risk assessments. Others might charge people more for smoking.

Under the Affordable Care Act, employers are allowed to discount health insurance premiums by up to 30 percent -- and in some cases 50 percent -- for employees who voluntarily participate in a wellness program.

The bill is under review by other House committees and still must be considered by the Senate. But it's already received strong criticism from a broad array of groups as well as House Democrats. In a letter sent to the committee earlier this week, nearly 70 organizations, representing consumer, health and medical advocacy groups, including the American Academy of Pediatrics, AARP, March of Dimes, and the National Women's Law Center, said the legislation, if enacted, would undermine basic privacy provisions of the Americans with Disabilities Act and the 2008 Genetic Information Nondiscrimination Act, or GINA.

Congress passed GINA to prohibit discrimination by health insurers and employers based on the information that people carry in their genes. There is an exception that allows for employees to provide that information as part of voluntary wellness programs. But the law states that employee participation must be entirely voluntary, with no incentives to provide it, or penalties for not providing it.

But the latest legislation would allow employers to impose penalties of up to 30 percent of the total cost of the employee's health insurance on those who choose to keep such information private.

"It's a terrible Hobson's choice between affordable health insurance and protecting one's genetic privacy," said Derek Scholes, director of science policy at the American Society of Human Genetics, which represents human genetics specialists. The organization sent a letter to the committee opposing the bill.

The average annual premium for employer-sponsored family health coverage in 2016 was $18,142, according to the Kaiser Family Foundation. Under the plan proposed in the bill, a wellness program could charge employees an extra $5,443 in annual premiums if they choose not to share their genetic and health information.

The bill, Preserving Employee Wellness Programs Act, HR 1313, was introduced by Rep. Virginia Foxx, R-N.C., who chairs the House Committee on Education and the Workforce. A committee statement said the bill provides employers "the legal certainty they need to offer employee wellness plans, helping to promote a healthy workforce and lower health care costs."

The bill's supporters in the business community have argued that competing regulations in existing federal laws make it too difficult for companies to offer these wellness programs. In congressional testimony earlier this month, the American Benefits Council, which represents major employers, said the burdensome rules jeopardize wellness programs that improve employee health, can increase productivity, and reduce health care spending.

A House committee spokeswoman said those opposed to the bill "are spreading false information in a desperate attempt to deny employees the choice to participate in a voluntary program that can reduce health insurance costs and encourage healthy lifestyle choices."