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Note: Coerced into Health: Workplace Wellness Programs and Their Threat to Genetic Privacy

By Julia Wolfe. Full text here.

Abstract: “Workplace wellness programs have proliferated in recent years, thanks to a convergence of forces: the Affordable Care Act, steeply rising medical costs, and high rates of obesity and chronic illness. While aiming to lower healthcare costs and increase employee productivity, these initiatives raise troubling privacy concerns, specifically in the area of genetic privacy. This Note argues that incentivizing the disclosure of genetic information in wellness programs’ baseline health questionnaires— both genetic test results and family medical history—runs afoul of the Genetic Information Nondiscrimination Act (GINA). The Equal Employment Opportunity Commission issued a final rule in 2016 that permitted incentivizing disclosure of a spouse’s genetic information with a health insurance discount of up to thirty percent of the individual’s cost of coverage. However, in December 2017, a federal judge vacated it because the agency failed to provide reasoned explanation for the rule.

Now that the EEOC is back to the drawing board and employers are waiting for guidance, this Note urges the agency to adopt a rule clarifying that GINA’s “voluntary” wellness program exception prohibits incentivizing disclosure of GINA-protected information with health insurance discounts at any level. Part I provides background on GINA, wellness programs, and these programs’ regulation. Part II explains why financial incentives for disclosing genetic information amounts to coercion and renders such a practice involuntary. Part III proposes that a zero-incentive rule would further GINA’s purpose, present opportunities for more successful wellness program outcomes, and offer certainty to employers looking for legal clarity in this area.”