H.R. 1313 Undermines Health Privacy Protections

By: Hailey Cleek, JD/MA Bioethics Student at Wake Forest University

Sponsored by Rep. Virginia Foxx [R-NC-5], H.R. 1313, titled “Preserving Employee Wellness Programs Act”, allows employers to offer health insurance premium rebates to workers who take part in company wellness programs that may include submitting to “health risk assessments” through genetic testing. While H.R. 1313 does not require employees to enroll in such programs, it has received strong criticism by organizations such as the American Society of Human Genetics, American Academy of Pediatrics, AARP, and National Council on Disability due to its potential penalties for refusing genetic testing.

As it is currently written, it appears that employers can legally charge workers who refuse the genetic tests a higher price for insurance than those who submit for testing. H.R. 1313 allows a workplace to ask employees questions about genetic tests taken by themselves or family members, and it expands questions regarding the medical history of employees and their family members.

At its heart, H.R. 1313 runs counter to the Genetic Information Nondiscrimination Act (GINA). Passed in 2008, GINA was designed to prohibit the use of genetic information in health insurance and employment. Employers cannot use genetic information to hire, fire, or promote an employee; furthermore, an employer cannot require genetic testing; employee’s genetic information can only be shared with health care professionals. GINA allows employees to provide genetic information as part of voluntary wellness programs, yet participation must be completely voluntary with no incentives to provide or penalties for not providing information.

A May 2016 ruling by the Equal Employment Opportunity Commission stated that premiums could be cut by 30 percent for individuals who enroll in wellness programs. According to Kaiser Family Foundation statistics, shared by the American Society of Human Genetics in an open letter to Rep. Foxx, the average annual premium for employer-sponsored family health coverage in 2016 was $18,142. Thus, wellness plans can charge employees who do not submit to genetic testing and sharing an extra $5,443 annually, compared to employees who do share the information.

I encourage the Congressional committee to explore different ways to promote employee health and wellness without coercive invasion into individuals’ and families’ genetic information.

Re-posted with permission from Medium.com.

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