The chief architect of the Genetic Information Nondiscrimination Act is asking the Equal Employment Opportunity Commission to investigate the use of genetic data in wellness programs and offer compliance guidance -- while large employers are hoping for more flexibility in tying incentives to genetic screening.
Representative Louise Slaughter, a New York Democrat representing greater Rochester, urged the EEOC to take up the issue after controversy ensued from Penn State University's now-cancelled plans to require employees to undergo health risk assessments or else pay $100 extra in monthly premiums.
While Penn State's proposed health risk assessment did not include any genetic testing components, "their plan still raises concerns about the type of information that can be collected through wellness programs and the definition of 'voluntary' participation," wrote Slaughter, an 84-year-old microbiologist by training who spent more than a decade trying to get GINA passed through Congress before it was enacted in 2008.
"It is my strong hope that EEOC promptly drafts sub-regulatory guidance stopping this type of abuse and ensuring strong nondiscrimination protections for employees in wellness programs," Slaughter wrote, calling wellness plans with financial penalties "predatory and coercive."
As wellness programs have proliferated in recent years, they have also grown more ambitious, with the use of financial incentives, biometric screenings and in some cases genetic testing. Aetna is piloting a program for 500 of its most at-risk employees involving personalized lifestyle coaching and screening for three genes linked with obesity and overeating.
The EEOC is already working on guidance for wellness program compliance with federal nondiscrimination rules, at the urging of business and patient advocacy groups, and Slaughter is hoping that will include an examination of the use of financial penalties.
"Any employer wellness plan that coerces employees to provide genetic information through monetary incentives would violate the core intent of GINA," Slaughter wrote. "I believe that employee wellness programs can be successful without the collection of family history, genetic information and other sensitive personal information."
Meanwhile, large employers represented by the ERISA Industry Committee are asking the EEOC to revise certain GINA regulations to allow for more information to be included in wellness programs.
In its final GINA regulations, the EEOC took the position that employers are prohibited from offering any financial incentive for employees to provide genetic information, including family history -- an interpretation the ERISA Industry Committee "strongly disagrees with."
The business group is asking the EEOC to change the regulation, arguing in a letter earlier this year that the commission's interpretation "has undermined the effectiveness of health risk assessments, depriving workers and their families of a valuable tool for improving their health, and contributing to healthcare cost inflation."