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Why a House bill wants workers' genetic information

The legislation, if enacted, would allow employers to offer thousands of dollars in savings to workers who submit to a genetic test. But a broad group of privacy advocates warn that this could create a 'Gattaca'-like precedent.  

Rep. Virginia Foxx, R-N.C., chair of the House Committee on Education and the Workforce (seen here with House Speaker Paul Ryan) is sponsoring a congressional bill that could penalize employees who refuse to take a genetic test in the workplace.
J. Scott Applewhite/AP | Caption

Since 2008, Americans have been protected from being penalized for refusing a genetic test in the workplace or having to share the results with their employer.

That could change under legislation the House Committee on Education and the Workforce approved on Wednesday. Passed along party lines, the bill, put forward by chairwoman Rep. Virginia Foxx (R) of North Carolina, is now under review by other House committees.

If enacted, the legislation would mean that employees who refuse to submit to a genetic test as part of their office’s voluntary wellness program could lose out on up to a 30 percent reduction in health insurance costs. That could add up to $5,433 more a year in premiums, according to the average annual premium for employer-sponsored family health coverage in 2016.

Such incentives are forbidden under the 2008 Genetic Information Nondiscrimination Act (GINA), considered by some observers to be the first major civil rights act of the 21st century. But opponents in the business community say the law, which protects individuals from genetic discrimination, creates a patchwork of competing regulations that makes it difficult for employers to implement wellness programs to keep insurance premiums down for their workers.

Ms. Foxx’s bill, the Preserving Wellness Programs Act, is meant to be a solution. But consumer, health, and privacy advocates warn that the bill could create a nightmare calling to mind the 1997 science fiction film "Gattaca" (which dealt with the question of genetic discrimination in a future society) in that it would allow employers to discriminate against workers and their families whose genetic tests show increased risks for health problems.

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

Under GINA and other similar laws, employers and health insurers are prohibited from discrimination based on the results of genetic testing. There is an exception, however. Employees can willingly submit that information as part of voluntary wellness programs in the workplace. Voluntary wellness programs are designed to mitigate the cost of healthcare, and can include anything from gym discounts to $1,000 annual bonuses for employees who stay fit and don’t smoke.

A key part of this exception is that employee participation must be entirely voluntary, with no incentives for providing the data or penalties for not providing it, according to the Post.

The House bill would change that. Employers would be permitted to offer a 30 percent reduction in the total cost of health insurance for employees who submit to a genetic test. The average annual premium for employer-sponsored family health coverage in 2016 was $18,142, rising 3 percent from the year before, according to the Kaiser Family Foundation. That would mean an employee who declined to share such genetic information could lose out on $5,443 in incentives.

Proponents of the bill say such changes are necessary to fix the way that federal laws affect wellness programs and their efforts to curb the cost of healthcare.

The bill “is trying to streamline the regulatory scheme,” Kathryn Wilber, a senior official at the American Benefits Council, which represents employers’ interests, told The New York Times.

In congressional testimony this month, a spokeswoman for the American Benefits Council, Allison Klausner, said a patchwork of federal laws, including GINA and the Americans with Disabilities Act, impose conflicting regulations on wellness programs.

“Not only are these programs important for achieving better health outcomes for employees and their families, they also have the potential to increase employee productivity, improve workforce morale and engagement and reduce health care spending,” said Ms. Klausner.

Wellness programs are becoming commonplace in the American workplace. A 2015 study by the Kaiser Family Foundation found that 81 percent of US companies with more than 200 employees offer wellness programs, while 49 percent of companies with smaller workforces do the same.

But a broad coalition of consumer health and medical advocacy groups fear the changes the bill would enact would also undermine basic privacy provisions of GINA and the ADA in the process. Nearly 70 organizations, including the American Academy of Pediatrics, AARP, and the National Women’s Law Center, sent a letter to the House committee.  

“We strongly oppose any legislation that would allow employers to inquire about employees’ private genetic information or medical information unrelated to their ability to do their jobs, and to impose draconian penalties on employees who choose to keep that information private,” reads the letter.

As genetic testing has become more mainstream, privacy advocates have warned the data from these tests could be used against employees and would-be workers, as Laurent Belsie reported for The Christian Science Monitor in 2000. 

If doctors, armed with an individual's genetic code, eventually believe they can diagnose that a person in his 20s will incur a life-threatening disease in his 50s, who should know that information? The person? His relatives? His employer or insurer?

"We're not interested in genetic testing," says Herb Perone of the American Council of Life Insurers in Washington. But if such testing becomes routine medical practice, "we don't want to be denied basic information in the future."  

For some, the passage of GINA in 2008 quieted these concerns.

But this new legislation now pits genetic privacy against corporate efforts to keep the cost of healthcare down. Although the rise in healthcare costs has slowed since 2005, the cost of premiums for single and family coverage still increased 5 percent from 2010 to 2015.

Wellness programs are thought to be one answer to curbing how much those costs affect individual workers, although some have questioned the efficacy of the programs, as Tom A. Peter reported for the Monitor in 2008.

Many firms have found that getting their workforce into shape is much less expensive than paying for chronic health problems that result from tobacco use and weight issues. While a handful of companies have launched punitive programs, fining or even firing employees who fail to kick bad habits, many are achieving good results with incentives-based programs. Still, some worry that these policies turn the boss into Big Brother. In addition to other House committees having to wrestle with this question, the Senate has yet to take up the legislation. 

Other House committees are scheduled to address this legislation before it can be taken up by the Senate.

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