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Anti-Discrimination Law Clarifications Benefit Employers, May Confuse Public, Say Critics


NEW YORK (GenomeWeb) – The US Equal Employment Opportunity Commission finalized a rule last week explaining that under the Genetic Information Non-Discrimination Act (GINA), employers can offer incentives to an employee's spouse for answering questions about his or her health status as part of wellness programs.

Employer groups and some industry professionals believe this and another final rule on the Americans with Disabilities Act (ADA) clarify a longstanding uncertainty about the extent to which they can offer employees and spouses inducements for providing health information within wellness programs. "It's a really good step forward" in terms of explaining to employers what they can and can't do, said Jeff Ruby, CEO of Newtopia, a firm that provides workplace wellness programs and coaching.

However, groups like Genetic Alliance and the American Society of Human Genetics believe that the EEOC's interpretation chips away at anti-discrimination and privacy protections they fought so hard to put in place, and will discourage people from participating in large national studies that depend on people's willingness to donate their genetic and other health information.

"Genetic Alliance is appalled that at this time, when programs such as the Precision Medicine Initiative are poised to reap the benefits of genomic science, that the EEOC is willing to increase the risks of genetic discrimination and punch holes in medical privacy," said Sharon Terry, CEO of the advocacy organization that aims to advance genomics research. "We believe this will discourage people from seeking out genetic tests and treatments."

Title I of GINA makes it illegal for insurers to use people's genetic data to make insurance coverage decisions. Title II, the focus of EEOC's final rule, bars employers from using such information to make hiring, promotion, or other employment decisions. To ensure against these types of discrimination, GINA prohibits employers and insurers from requesting, requiring, or purchasing their employees' genetic information, except under limited circumstances.

One exception is that employers can request genetic information when they offer health or genetic testing services, for example, as part of a wellness program. However, the law forbids employers from providing inducements on the condition that an employee providers genetic information.

Since implementation of Title II in 2010, employers interested in reducing healthcare costs have wanted clarification as to whether they would be violating GINA if they offered incentives to employee's spouses for providing health information within wellness programs. There was confusion about this because GINA defines "genetic information" as data from an individual or family member about genetic tests and diseases they've had. Moreover, the law defines an employee's "family member" as his dependents through marriage, birth, and adoption.

Attempting to clear up this confusion, EEOC said in a final rule that starting in 2017, employers can offer an employee limited incentives when a spouse provides information about the "manifestation of disease or disorder" in a health-risk assessment for a wellness program. However, "this narrow exception … does not extend to genetic information about a spouse," the EEOC stated, and further noted that employers cannot offer an employee's children (minors and adults) incentives in exchange for health or genetic information.

"There is minimal, if any, chance of determining information about an employee's genetic make-up or predisposition to disease from health information about the employee's spouse," the EEOC explained on its website. "By contrast, there is a significantly higher likelihood of discovering information about an employee's genetic make-up or predisposition to disease from health information about the employee's children."

This did not reassure groups like ASHG, who object to any weakening of GINA. "If you have the health information of the employee and the health information of the spouse, you can tell the health information of the children," Derek Scholes, director of science policy at the American Society of Human Genetics, told GenomeWeb.

In its final rule, EEOC acknowledges the definitions of "genetic information" and "family member" under GINA, but nonetheless carves out an allowance for incentivizing a spouse to provide health-related information. "It makes no sense," said Scholes, whose group characterized the EEOC-permitted "incentives" as "penalties."

In another final rule last week, the commission clarified that under the ADA employers can offer incentives to employees for providing information about their health as part of voluntary wellness programs. Wellness programs are "voluntary" as long as employers cap incentives at 30 percent of the total cost of self-only coverage, which for an average plan costing $6,000 a year, amounts to a maximum reward of $1,800. 

ASHG, which had worked for years alongside advocacy organization like Genetic Alliance for the passage of GINA, pointed out that for plans covering both the employee and spouse, the employee could be penalized by as much as 60 percent for not providing health information as part of wellness program questionnaires, which for an average plan costing $6,251 per year, would impose a penalty of $3,750. "By no dictionary definition is this voluntary," Scholes said. "This opens the door to clear coercion."

In allowing employers to offer inducements under certain circumstances, the EEOC noted that an employer still must follow GINA's confidentiality requirements and cannot use the obtained information to discriminate against an employee. Additionally, the genetic information gathered as part of a wellness program can only be disclosed to employers in aggregate. Moreover, an employer can't require that an employee or spouse sell or somehow distribute their health information in order to receive an inducement or partake in a wellness program.

The EEOC also added a new paragraph in its final rule that bars employers from "retaliating against" or denying benefits or health insurance to an employee whose spouse declines to provide information about health status within a wellness program. And the spouse has to provide written authorization to the employer to collect genetic information. 

In the preamble to the final rule for GINA, EEOC discusses best practices for ensuring health data remain private through clear policies, trained staff, and encryption methods. Personally identifiable information collected through wellness programs under group health plans are protected by privacy and security rules under the Health Insurance Portability and Accountability Act (HIPAA), the EEOC said.

Despite these reassurances, genomics research and advocacy groups believe that the EEOC's final rule increases the risk for discrimination. Genetic Alliance, ASHG, and more than 100 co-signing organizations penned a letter to EEOC earlier this year expressing concern that its proposed changes to ADA and GINA would allow workplace wellness programs to "harvest personal health and genetic information on an industrial scale." The organizations wrote that advances in technology make it increasingly possible to re-identify individuals even from aggregate genetic data. They also pointed out that HIPAA privacy rules don't apply to many workplace wellness programs not provided under group health plans.

Genetic Alliance's Terry has previously criticized employer groups for lobbying for these changes to GINA and ADA so they can push more and more insurance costs to employees. In issuing the final rule, the EEOC said a wellness program must be "reasonably designed to promote health or prevent disease," which means that it can't be "a subterfuge" for violating GINA, and it can't exist just to "shift costs from an employer to employees based on their health."

Providers of workplace wellness programs will have to factor in the EEOC's clarification into their commercial strategies. Based on the genetic test results, as well as personality and lifestyle assessments, Newtopia offers targeted coaching to help improve people's nutrition and behavior. However, Newtopia's Ruby said his firm doesn't advocate or "play into" the incentives side.

"We're much more focused on identifying intrinsic motivators for individuals, as opposed to using extrinsic motivators," he said. The firm — which is based in New York and Toronto, and is HIPAA covered — has not yet had any employer customers attach a monetary incentive to encourage employee participation in its prevention programs, according to Ruby.

Newtopia's website states that through its "hyper-personalized and scientific approach" employers can reduce healthcare costs while "at-risk employees achieve sustainable well-being." As support for these claims, the firm cites research published in the Journal of Occupational & Environmental Medicine last year, based on Aetna's pilot ofNewtopia's wellness program in 445 employees with an increased risk for metabolic syndrome.

The randomized-controlled study showed that 76 percent of those participating lost an average of 10 pounds, saving the firm $1,464 per employee over one year. Researchers used claims data, not any monetary incentive, to calculate the savings, Ruby explained. The EEOC's final rules provide clarity to employers, he said, "so players like us that are outcomes based wellness programs will be able to thrive and offer our services in what was a fairly uncertain environment before."

On the other hand, detractors of EEOC's actions counter that the final rules could create more uncertainty in the minds of the public at a time when the government is asking people to partake in studies like the PMI and the Cancer Moonshot, which will collect and analyze participants' genomic and other health information. Studies have shown that people generally have limited awareness of the legal protections under GINA and its gaps.

GINA extends protections against employment and health insurance discrimination based on their genetic data, but not when it comes to life insurance firms or to disability insurers. Likely due to these gaps and uncertainty about the protections under the law, study participants have declined to partake in genetics research citing fear of insurance discrimination.

Research advocates fear that EEOC's final rule convolutes the interpretation of anti-discrimination and privacy laws in a way that will lead to more public misunderstanding and fear, which in turn will further deter people from participating in genomics studies. "By establishing a stark difference between the treatment of employees’ spouse information and that of their other family members, this regulation can only serve to further confuse the public about GINA’s protections," Scholes said.

"It could impact research such as the PMI, where returning research results to participants is a signature feature," he said. "People may choose not to participate in the PMI if they fear that they will be coerced into reporting these results to their employers' wellness programs."