Proposed federal legislation could weaken genetic privacy protections and allow employers to pressure their employees to divulge genetic information through wellness programs, according to a commentary published online May 24 in the New England Journal of Medicine.
To prevent genetic discrimination, several federal laws have been enacted to protect the privacy of genetic information and prohibit employers and health plans from using genetic information in employment or coverage decisions.
However, the Preserving Employee Wellness Programs Act (HR1313) currently being considered in the US House of Representatives could roll back some of those protections, warns Kathy Hudson, PhD, formerly the deputy director for science, outreach, and policy at the National Institutes of Health, and Karen Pollitz, MPP, a senior fellow the Kaiser Family Foundation.
“H.R. 1313 undermines the principle that genetic information needs the highest level of protections so that people can make decisions about obtaining their own information without fearing that it might be used against them,” the authors explain.
At this time, the Americans with Disabilities Act bars employers from discriminating against individuals who have disabilities or who are perceived to have disabilities. The Genetic Information Nondiscrimination Act (GINA) prohibits employers or insurers from requesting genetic information or using it for employment or coverage decisions. The Affordable Care Act (ACA) also protects against preexisting condition exclusions in health coverage that are based on genetic or other health information.
The ACA made some exceptions for workplace wellness programs, the authors say. Under the law, wellness programs were allowed to vary an employee’s share of premiums by up to 30% based on whether they met health goals outlined in the program. GINA and the Americans with Disabilities Act were revised in 2016 to allow employers to charge individuals who decline to participate in voluntary wellness programs more for their insurance, although it did not allow them to be fired or refused health benefits. The programs were, however, prohibited from penalizing individuals who decline to provide genetic information.
H.R. 1313’s sponsor, Virginia Foxx (R-NC), argues that it clears up confusion surrounding the various laws that apply to wellness programs. Under the legislation, programs that complied with ACA rules would automatically be considered compliant with GINA and ACA.
“By reaffirming the policies outlined in the ACA, H.R. 1313 removes this legal uncertainty so employees can continue to benefit from these voluntary wellness plans,” Foxx says in a statement on her government website.
The bill would remove the limits GINA places on incentives employers could use to get their employees to divulge health information, including genetic information, according to Dr Hudson and Pollitz.
“Employers could pressure employees to disclose information, and wellness programs could share identifiable information with employers,” they write.
In an interview with Medscape Medical News, Ifeoma Ajunwa, JD, PhD, a fellow at the Berkman Klein Center at Harvard University, Cambridge, Massachusetts, confirmed that H.R. 1313 clarifies existing law in favor of employers and allows employers to collect genetic information.
“The risk is that it opens the door to discrimination,” Dr Ajunwa said. “The employer could have an incentive to fire all employees who could be perceived as costly to their insurance.”
Genetic information collected by employee wellness programs could also be used as a proxy for racial or ethnic discrimination, Dr Ajunwa told Medscape Medical News. For example, mutations in the BRCA1 and BRCA2 genes are more common among Ashkenazi Jews and could be used as a proxy to discriminate against Jewish women, she noted. Or sickle cell disease–linked genetic variations could be used as a proxy to discriminate against blacks.
Another concern is what employee wellness programs could do with the information. Dr Ajunwa said that although the Health Information Portability Act applies to healthcare providers and insurers, it is not settled law that it applies to wellness programs. This could leave open the door for the programs to share or sell the employees’ data with others. The data could also be a target for hackers seeking to sell health information.
In addition, Dr Hudson and Pollitz argue that H.R. 1313 could have a chilling effect on genetic testing for clinical and research purposes because individuals may hesitate to undergo testing if they could be pressured by their employers to disclose that information to their workplace wellness program.
D Ajunwa agreed, “They would be more reticent to undergo genetic testing for fear of what their employer would do with the information.”
The authors and commentator have disclosed no relevant financial relationships.
N Engl J Med. Published online May 24, 2017. Full text
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