Proposed Incentivized Wellness Bill Raises Concerns about Employee Privacy Under GINA | GenomeWeb

Proposed Incentivized Wellness Bill Raises Concerns about Employee Privacy Under GINA

NEW YORK (GenomeWeb) – Recently introduced legislation that would allow employers to ask people about their family medical history as part of financially incentivized wellness programs has patient health advocates concerned that the bill would put at risk privacy protections under the Genetic Information Nondiscrimination Act of 2008 (GINA).

The so called ''Preserving Employee Wellness Programs Act" (H.R. 1189/ S. 620) was introduced in March by Rep. John Kline (R-Minn.) in the House of Representatives and by Lamar Alexander (R-Tenn.) in the Senate. Employer groups and providers of wellness programs believe the legislation protects them from legal liability and enables them to more effectively provide incentivized employer-sponsored wellness programs.

However, some health advocacy organizations believe the bill could open the door for employers offering financial rewards for wellness programs to coerce their employees in to revealing their family medical history and genetic information that is currently protected under GINA. Laura Koontz, director of policy at the Ovarian Cancer National Alliance – one of the groups opposed to the bill – questioned why employers would need this type of information at all to effectively promote healthy behaviors.

Under the Affordable Care Act (ACA), employers can provide financial incentives – up to 50 percent off insurance premiums and other rebates – to employees for participating in programs that encourage healthy living. The latest bill from Alexander and Kline aim to "clarify" the rules guiding such programs, and would allow employers to collect information about employees' preexisting conditions or a disease that runs their families. Additionally, the bill clarifies that by offering a reward to wellness program participants, employers would not be violating the Americans with Disabilities Act of 1990 or GINA, as long as the program complies with the Public Health Service Act requirements.

Under GINA, people's family history falls under the definition of "genetic information," since such data can indicate one's own or a relative's predisposition for disease. For example, if it's known that a person has a parent with an autosomal dominant disease, such as Huntington's, then it is also known that the individual has a 50/50 chance of inheriting the genetic marker responsible for the neurodegenerative disorder. Similarly, information that a woman has a strong family history of breast or ovarian cancer suggests that she and other relatives might also have a high risk for the diseases and may harbor risk mutations in genes such as BRCA1 and BRCA2.

Under the Alexander/Kline bill, however, the collection of such data would not be considered a violation of GINA with respect to an employee's family member who is also participating in a wellness program.

Title I of GINA makes it illegal for insurers to use people's genetic data to make insurance coverage decisions, and Title II bars employers from using such information to make hiring, promotion, or other employment decisions. As an added privacy protection, GINA also prohibits employers and insurers from requesting, requiring, or purchasing their employees' genetic information.

"The writers of GINA were concerned that it would be hard to prove discrimination in an employment case, so they wanted to add in this extra layer of privacy protection by saying that an employer couldn't even ask" about genetic information, Koontz explained. "It's one thing that they can use this information to discriminate against you, but they shouldn't even be allowed to ask this information in the first place."

According to the US Equal Employment Opportunity Commission (EEOC), employers "must tell their health care providers that they cannot ask about family medical history when conducting post-offer or fitness-for-duty examinations." However, there are a few exceptions. For example, an employer cannot be held at fault under the law if it obtains an employee's genetic data by accident, from publicly available sources, or if the employee volunteers the information. If the employer does get an employee's genetic data, then the employer must keep that information private.

A person must give written consent before a wellness program can ask him or her about their genetic information or family history in a health assessment questionnaire. "Repealing requirements that employee disclosure of that information be voluntary in effect allows employers to coerce them into revealing your private genetic information," Koontz said. "I really don't understand what [employers] need this information for [if the aim is] to encourage their employees to engage in healthy behaviors, such as eating less and exercising more."

Genetic Alliance, a genomic research-focused health advocacy organization, recently penned a letter to members of Congress expressing its opposition to this bill and is asking other organizations to sign on to it. "We strongly oppose any policy that would allow employers to inquire about employees' private genetic information or medical information unrelated to their ability to do their jobs, and penalize employees who choose to keep that information private," the group wrote in the letter.

Rep. Louise Slaughter (D-NY), who authored GINA, also issued a statement calling on other representatives to oppose the Alexander/Kline legislation. In her view the bill would hinder the EEOC's authority to look into and litigate discrimination complaints from people enrolled in employer-provided wellness programs.

"I fought for 14 years to pass GINA because Americans were losing their jobs and their health care due to their genetic information being used against them," Slaughter wrote in a release. "All Americans should be able to enjoy better health benefits – whether they are genetic tests or corporate wellness plans – without being coerced into sharing private genetic information. This bill is a clear attack on Americans' privacy."

Before former US President George W. Bush signed GINA into law in 2008, groups such as Genetic Alliance had been trying for more than a decade to bring about laws that would protect people against discrimination based on their genetic data. Genetic Alliance, patient groups, and researchers have long maintained that such protections are critical for advancing the field of genomics, conducting studies that elucidate the genetic underpinnings of disease, encouraging the use of critical genetic tests, and developing personalized treatments.

When GINA finally became law, it wasn't a home run, many advocates criticized. Some naysayers of the law said it would encourage “unmeritorious litigation," while others highlighted the law's shortcomings. For example, GINA doesn't extend to life insurance firms or to disability insurers. Moreover, the law doesn't restrict payors and employers from using people's genetic information if such data are part of pre-existing conditions. Under the ACA, as of last year, health insurers can't bar coverage or charge higher premiums based on a person's pre-existing condition.

Alexander has voted consistently in opposition to the ACA and sponsored a bill to repeal the White House-sponsored healthcare law earlier this year. Meanwhile, Kline headed up a House workgroup this year to craft a Republican alternative to the ACA.

Supporters of the latest Alexander/Kline bill say that its provisions clarify the law regarding the collection of family history information as part of wellness programs for which participants can get financial rewards. Alexander issued a statement this week highlighting all the support S.620 has from groups representing employers and providers of employer-sponsored wellness plans.

"To maintain global competitiveness and help achieve good health in our communities, American companies must encourage healthy behavior with every tool in our toolkit," said James Klein, president of the American Benefits Council (ABC), in a statement supporting the bill.

Kathryn Mueller, president of the American College of Occupational and Environmental Medicine, issued a statement that S. 620 would provide legal support to employers "who may be hesitant to provide wellness programs for fear of violating EEOC requirements."  

A number of groups representing the interest of employers, among them the Society of Human Resource Management, the US Chamber of Commerce, and the National Association of Manufacturers, said that S. 620 would provide necessary clarification of the "legality of voluntary workplace wellness programs and employers' use of financial incentives to encourage participation in such programs."

Many employers groups have pointed out that while regulations are not clear about whether a voluntary wellness program remains voluntary if it provides a financial incentive, such rewards do encourage participation. Studies have shown that participation in wellness programs increased from 40 percent in non-incentivized programs to 70 percent with a $200 incentive and up to 90 percent when the inducements are tied to health plan premiums or deductibles.

"Notwithstanding employers’ increasing interest in establishing wellness programs, a great deal of legal uncertainty exists with respect to the application of both GINA and the [American Disabilities Act] to these programs," Tamara Simon of Buck Consultants said in written testimony to Congress. Buck is a human resource consulting firm under Xerox.

Under GINA, wellness programs cannot reward individuals differentially if they provide genetic information. Employees can be rewarded for completing health risk assessments that offer them the chance to voluntarily provide genetic and family history information. If the genetic data a person has voluntarily divulged indicate he or she is at risk for a particular disease, then the program can provide incentives for participating in a disease management strategy. However, the program also has to similarly incentivize people who haven't shared genetic information but whose current health status or lifestyle choices also put them at risk for developing a condition.

"Questions remain regarding how GINA applies to various aspects of some common wellness program designs, including the use of wellness incentives in connection with spousal and dependent health risk assessments," Simon wrote in testimony, which she delivered at a hearing on the Alexander/Kline legislation on March 24 on behalf of the American Benefits Council. The hearing was held by the House Subcommittee on Workforce Protections. However, it's still unclear from Simon's testimony how employers might hope to improve wellness programs by greater collection of genetic information through a rewards-based system.

Meanwhile, Genetic Alliance's main concern with the Alexander/Kline legislation, as expressed in its letter to legislators, remains that asking people to divulge information on family history could place undue pressure on them when it is done under financially incentivized wellness programs. "Individuals ought not to be subject to steep financial pressures by their health plans or employers to disclose their or their families' genetic and medical information," the group wrote.

The bill has been referred to the House Committee on Education and the Workforce, as well as to the Committees on Energy and Commerce, and Ways and Means. The offices of Alexander and Kline did not respond to questions for this article ahead of press time.

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