EEOC Tries to Harmonize ACA’s Promotion of Employer Wellness Programs with GINA’s Ban Against Employer Access to Genetic Information of Employees and Employees’ Family Members

[Cross-posted from the Genomics Law Report blog]


Gina-name-tagThe Equal Employment Opportunity Commission (EEOC) is responsible for enforcing Title II of the Genetic Information Nondiscrimination Act (GINA), which prohibits employers from requesting genetic information (defined broadly) from their prospective, current, or former employees. GINA contains only six limited exceptions to this prohibition, one of which is an exception for wellness programs in which the employee’s participation is voluntary.

On October 30, 2015 the EEOC issued a proposed ruleto amend GINA regulations in an attempt to harmonize them with the Affordable Care Act’s promotion of employer wellness programs to lower health care costs. The proposed rule tries to clarify that employers are permitted to offer incentives for an employee’s spouse to participate in a voluntary wellness program (but not the employee’s other dependents). The permissible incentives are capped at 30% of the total cost of the plan in which the employee and dependents are enrolled. The EEOC’s expressed intent is to treat GINA’s Title I (health insurance) and Title II (employment) provisions similarly. The proposed rule would allow employers to request current and former health status information from an employee’s spouse as part of their participation in the employer-sponsored wellness program. And there’s the rub: the current or former health status of an employee’s spouse is the employee’s own “genetic information” as the term is statutorily defined in GINA. The EEOC has prepared a Q&A page to explain the proposed rule, and the Congressional Research Service issued a report (R44311) on the topic on December 17, 2015.

Genetic Alliance has come out in firm opposition to the EEOC’s proposed rule on wellness programs, identifying three key problems: the usage of “voluntary” wellness program is perverse; the “reasonably designed” standard for the wellness program (which, similar to the EEOC’s proposed changes to the regulations for the Americans with Disabilities Act, would allow an employer to include components in the program such as requests for genetic information so long as those components are “reasonably designed to promote health or prevent disease”) is such a low bar that it is a meaningless threshold; and the redefinition of “genetic information” eviscerates the protections of family medical history that were intended by GINA. Genetic Alliance ultimately concludes the proposed rule is “unnecessary and unlawful” and makes a number of recommended changes (e.g., that the notification requirements be strengthened, that the design standard be raised to require scientific proof of efficacy before allowing a wellness program to request genetic information, and that required privacy safeguards be strengthened).

GINA’s definition of “genetic information” covers more than the common understanding (i.e., genetic testing results or genome sequence information), although early reactions to the proposed rule suggest GINA’s broad definition continues to elude common understanding (even when the public is thinking specifically about this genetic nondiscrimination statute). Nevertheless, wellness programs are pushing the allowable limits even under the more narrow common understanding, as is evident from recent news stories of wellness programs incorporating genetic testing for weight gain or obesity. To be worthy of its trumpeted reputation as the first major civil rights legislation of the new millennium, GINA must be enforced in such a way that it stops invidious discrimination on the basis of genetics before the practice becomes widespread. The EEOC, at a minimum, should provide additional guidance so that others can more readily identify a wellness program that (1) fails to “have a reasonable chance of improving the health of, or preventing disease in, participating individuals”; (2) is “overly burdensome”; or (3) is “a subterfuge for violating Title II of GINA,” factors which the EEOC indicated would cause a wellness program to run afoul of the regulations .

There is a question as to whether the EEOC has the authority to do what it is attempting to do. Congress has precisely and unambiguously addressed the definitional issue of “family member” and “genetic information” in the statute itself. These terms are not open for EEOC’s (or any other GINA-enforcing agency’s) own interpretation or revision. The EEOC acknowledges these two specific GINA definitions and yet has deliberately drafted the NPRM in contradiction of both of them. There are solid legal arguments that the EEOC must implement and enforce GINA based on the intelligible principles that Congress set forth and using the definitions Congress specified – namely, that “genetic information” is not only genome sequence and genetic test results of the individual but also family medical history (including a spouse’s current or past health status). By changing the rule for employees’ spouses while leaving the protective rules intact for other dependents (such as children), the EEOC is omitting some individuals from the intended definition of “family member” (which refers to not only children but also spouses). Congress intended for medical history of family members (whether spouses, adoptive children, or biological children) to be treated similarly and be protected. The EEOC’s attempt to treat health status information of spouses differently from that of children stands in stark contradiction with the statutory requirements established by Congress.

While the comment period was originally set to close on December 29, 2015, the EEOC extended the period for public comment to January 28, 2016. Thus far, fewer than 50 comments have been submitted to the EEOC on the proposed rule amending GINA’s wellness program provisions.

The Petrie-Flom Center Staff

The Petrie-Flom Center staff often posts updates, announcements, and guests posts on behalf of others.

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