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EEOC-Proposed Rule Raises Concerns it Will Weaken Genetic Anti-Discrimination Protections


NEW YORK (GenomeWeb) – The Equal Employment Opportunity Commission's proposed rule to change aspects of the Genetic Information Non-Discrimination Act with regard to employer-backed wellness programs has some advocacy groups concerned that the move will weaken civil rights protections under the law.

Meanwhile, members of the business community would like to see the EEOC interpret a narrower definition of "genetic information" and expand the ability of wellness plans to request this information from all covered dependents of employees, including children.

Title II of GINA, which became law in 2008, restricts employers from making job-related decisions based on an employees' genetic information. The law forbids employers from even asking for or purchasing genetic information except when the employee voluntarily accepts health or genetic services, including wellness programs, from the employer. But even then, the employee has to give this information voluntarily, the wellness program cannot ask employees to provide genetic information in order to receive incentives, and the employer can only receive aggregate information but not individual employee data.

In October, the EEOC issued a notice of proposed rulemaking to amend Title II and clarify that employers may legally offer a "limited incentive" to an employee's spouse who is covered under the employee's health plan, receives health or genetic services as part of a wellness program, and provides information about current or past health status as part of a health risk assessment.

"GINA clearly prohibits wellness programs from requiring employees to provide their genetic information as a condition for receiving incentives," the EEOC explains in a "question and answer" document posted on its website. "However, the statute does not clearly extend this prohibition to incentives offered in exchange for an employee's spouse providing information on his or her current or past health status."

The proposed changes to Title II, according to the EEOC, would align it with other laws: the Americans with Disabilities Act (ADA), which allows employers to collect medical information as part of wellness programs "reasonably designed" to promote health or prevent disease; Title I of GINA, which allows group health plans to incentivize participants, including employees' spouses, to provide information on current and past health status within wellness programs; and provisions in the Affordable Care Act (ACA) that seek to encourage participation in wellness programs.

The EEOC had given the public until the end of December to comment on its notice of proposed rulemaking, but has now extended it until Jan. 28. Currently, there are more than 25 comments from stakeholders, many of which object to the EEOC's proposal, while some in the business community want the EEOC to be even more liberal on wellness program inducements.

Not voluntary

The biggest opposition to the changes has come from Genetic Alliance, a genetics and health-focused advocacy organization that worked for years for the passage of GINA. "The whole purpose of GINA was to provide peace of mind to people who sought genetic testing, genetic medicine services, or wanted to volunteer for genetic research that they could do so without fears that this information would get into the wrong hands and result in employment or insurance discrimination," Genetic Alliance CEO Sharon Terry told GenomeWeb.

The group has penned a letter opposing the EEOC proposed rule, which currently has more than 250 signatures, 100 of which represent organizations, including patient groups, disease-specific associations, universities, academic medical centers, and consulting firms. "We think this will result in people being less willing to participate in efforts like [President Barack Obama's] Precision Medicine Initiative, or even to get tested and seek genetically based treatment," Terry said.

Genetic Alliance asserts that EEOC's current regulations for GINA are already aligned with the ACA's goals on wellness programs. After ACA's passage, the EEOC adopted regulations allowing wellness programs to ask for genetic information as long as employees provide it voluntarily, the questions are flagged in a health risk assessment, and employees aren't penalized for not answering those questions.

"The ACA wellness regulations expressly state that wellness programs also have to abide by all applicable laws, including GINA and the ADA," Terry noted. "Complying only with the ACA isn’t enough. GINA also applies to wellness programs, with no more or less weight than the ACA."

We think this will result in people being less willing to participate in efforts like [President Barack Obama's] Precision Medicine Initiative, or even to get tested and seek genetically based treatment.

The EEOC's proposed changes allowing incentives for such disclosures from a worker's spouse would by definition cease to make such disclosures voluntary, Genetic Alliance argues. Wellness programs cannot provide incentives exceeding 30 percent of the total cost of the plan into which the employee and dependents are enrolled. The EEOC estimates that for a $14,000 family plan, this would mean a family could receive financial or other rewards valued at $4,200 for providing health information as part of a wellness program.

By Genetic Alliance's calculations, however, the "incentives" could turn into penalties for families when employees' spouses refuse to provide such information. The group estimated that for a family coverage plan in 2015 costing $17,545, the maximum annual penalty on average would be $5,264 per family.

Narrow definitions

More fundamental objections to the EEOC-proposed rule have to do with its interpretation of what constitutes "genetic information," which GINA defines as a person's or their family members' genetic test results, and information about family medical history. Since the definition of "family member" under GINA includes dependents by marriage, a spouse's status would fall under family medical history and qualify as genetic information.

"Congress has precisely and unambiguously addressed the definitional issue of 'family member' and 'genetic information.' These terms are not open for EEOC's (or any other GINA-enforcing agency's) own interpretation or revision," Jennifer Wagner, a lawyer and the associate director of bioethics research for Geisinger Health System, wrote in comments to the EEOC. "The EEOC acknowledges these two specific GINA definitions and yet deliberately has drafted the [notice of proposed rulemaking] in contradiction of both of them." Wagner also penned a blog post discussing her issues with the EEOC-proposed changes to GINA.

The EEOC admits in the notice of proposed rulemaking that it is attempting to adopt "a very narrow exception" in the definition of "genetic information," which would allow inducements only for a spouse's current or past health status as a way to strike a balance between GINA's protections and the ACA's aim to promote participation in wellness programs. 

One healthcare industry professional representing the Healthcare Leadership Council (HLC) lauded the EEOC's efforts in this regard. "Finalized guidance will reduce the uncertainty that employers who implement evidence-based wellness programs currently face, as well as the chilling effect this has produced on the ability of employers to support wellness programs that improve the health of employees," Debbie Witchey, executive VP of the HLC, wrote in comments to the proposed rule.

Thomas Wilder, senior counsel to America's Health Insurance Plans (AHIP), had a narrower understanding of the terms "genetic information" and "family member" as defined under GINA. "GINA applies to situations where an individual is asked to either: (a) undergo a genetic test, (b) provide genetic test results, or (c) provide family medical history," he wrote in comments to the proposed rule. "GINA does not restrict employers from asking a spouse about his or her own medical condition (except for genetic test results)."

AHIP also wants the EEOC to permit wellness programs to offer incentives to all the dependents of an employee — not just spouses but also children — for reporting genetic information. The EEOC's proposed rule would allow wellness programs to offer incentives for information about the health status of an employee's spouse but restrict this in the case of children. The EEOC notes that while there is minimal chance of gleaning an employee's' genetic information from his or her spouse's health status, there is much greater risk of this when the children's health status is known. 

But AHIP believes this distinction is incongruent with the ACA, which requires health plans to cover children of employees until age 26, and allows plans to offer healthcare services and wellness programs to dependents. "Allowing incentives for employees and their spouses, but not for dependent children makes no sense," Wilder wrote.

We need to encourage people to participate in research and clinical studies so that the complex interplay between genes and environment is understood and results in actionable information for people and their families.

Pushing for changes

Employer groups and providers of wellness programs backed a bill introduced by Republican legislators last year that would allow employers to collect information about employees' preexisting conditions or a disease that runs their families. Additionally, the bill clarified that by offering a reward to wellness program participants, employers would not be violating the ADA or GINA, as long as the program complies with the Public Health Service Act requirements.

The business community supported the bill, reasoning that it protected them from legal liability and enabled them to more effectively provide incentivized employer-sponsored wellness programs. Genetic Alliance had lobbied against this bill, and Terry noted that the legislation hasn't made much progress in Congress.

"Despite the overwhelming lack of evidence that these programs do no good, employers love them because they can shift much of the cost for health insurance on to their employees," Terry said.

In a 2013 report in Health Affairs, researchers led by health policy expert Jill Horwitz from the University of California, Los Angeles reviewed randomized controlled trials and concluded that there was scant evidence that wellness programs can "easily save costs through health improvement without being discriminatory." Based on their research, Horwitz et al. further concluded that "savings to employers may come from cost shifting, with the most vulnerable employees — those from lower socioeconomic strata with the most health risks — probably bearing greater costs that in effect subsidize their healthier colleagues."

"Wellness programs that encourage people to engage in health behaviors and look after their health are great. But, as the Genetic Alliance knows all too well, not all medical issues are dictated by behavioral changes or choices," Terry said. "We need to make sure that wellness programs don't violate people's privacy or their civil rights, and these EEOC rules will allow employers to do both."

These efforts to amend GINA come as genetic testing is starting to be incorporated into employer wellness programs. Jackson Laboratory and Aetna piloted a personalized wellness program developed by Newtopia in employees with symptoms of metabolic syndrome, who voluntarily agreed to get tested for genetic markers associated with eating behavior, appetite, and obesity. Based on the genetic test results, as well as personality and lifestyle assessments, Newtopia offers targeted coaching to help improve nutrition and behavior.

Last year, researchers from Aetna published data in the Journal of Occupational & Environmental Medicine from the wellness program piloted in 445 employees. 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. "At scale, such programs would be expected to lead to significant downstream reduction in major clinical events and costs," the study authors concluded.

However, critics have asserted that the genetics applied within wellness programs to encourage behavior changes aren't backed by robust scientific data, and may end up giving undue importance to the role of genes in complex conditions. "We need to encourage people to participate in research and clinical studies so that the complex interplay between genes and environment is understood and results in actionable information for people and their families," Terry said.