Workplace Wellness Plans Are Not So Well

Many employers who offer workplace wellness plans are violating the privacy rights of their employees. This is a significant problem in the United States as approximately four percent of larger companies (those with 200 employees or more) and 50 percent of smaller ones offered some type of wellness program. Workers compelled to participate in these plans often have their privacy rights violated. In this article, we explain the rights of employees and the responsibilities of employers with workplace wellness plans.

What discrimination laws govern workplace wellness plans? Several different laws and regulations govern employee wellness programs, including the Americans with Disabilities Act ("ADA"), the Genetic Information Nondisclosure Act ("GINA"), the Health Insurance Portability and Accountability Act ("HIPAA"), the Affordable Care Act ("ACA"), the Genetic Information Privacy Act ("GIPA"). Wellness programs have design requirements and restrictions under the ACA. Programs that include medical and genetic information inquiries or examinations must be "voluntary" under the applicable civil rights laws to prevent discrimination.

Can I be forced to participate in a wellness plan at my job? As modified by the ACA, HIPAA recognizes two main categories of wellness programs: participatory and health contingent. Participatory programs are programs that do not condition receipt of the incentive on the satisfaction of a health factor.^[1] Examples include smoking cessation education (without regard to whether the employee quits smoking), reimbursement for gym memberships, and health education programs. Employers can choose to reward employees for participation in these programs. However, reimbursement or reward cannot be contingent upon any health outcomes. ^[2] Alternatively, health-contingent programs reward individuals based on their satisfaction with a particular health-related factor.^[3] These programs can look similar to participatory ones. However, the employee would have to quit smoking following smoking cessation classes successfully, or they would have to achieve a certain weight following exercise courses.

Can my job make me turn over medical and genetic information? To the extent that wellness programs solicit confidential medical and genetic information, all inquiries must be voluntary under applicable civil rights laws to prevent discrimination—the ADA and GINA.[4] Under the ADA, an employer is prohibited from “requir[ing] a medical examination” or “mak[ing] inquiries of an employee as to whether such employee is an individual with a disability or as to the nature or severity of the disability unless such examination or inquiry is shown to be job-related and consistent with business necessity." [5]. The ADA, however, permits a narrow exception to this general prohibition against non-job-related medical examinations and inquiries. Employers may make medical inquiries and conduct medical examinations as part of an employee wellness program, so long as those inquiries and examinations are “voluntary.” Any non-voluntary inquiry or examination is, in itself, an act of discrimination under the ADA.[6]

What information is protected from disclosure under workplace wellness plans? Under GINA, “genetic information” includes both information about an employee’s genetic tests and those of an employee’s “family members” and information about “the manifestation of a disease or disorder in family members,” also known as family medical history.[7] To protect employees from discrimination, GINA forbids employers "to request, require, or purchase genetic information concerning" an employee or their family members.[8] Similar to the ADA, GINA gives an exception for collecting genetic information through an employee wellness program. Under GINA, an employer can request genetic information about an employee or their family members when "health or genetic services are offered by the employer, including such services offered as part of a wellness program," but only if "the employee provides prior, knowing voluntary and written authorization.”[9] The 2010 GINA Rule forbade employers from exacting any penalties—or applying any incentives—that are conditioned on providing genetic information. [10]

Does the EEOC prohibit workplace wellness plans? The EEOC addressed the "voluntary" standard in the ADA and GINA. The ADA provides that an employer may conduct medical examinations and collect employee medical history as part of an "employee health program," as long as the employee's participation in the program is "voluntary." The 2016 rule reflects a departure from the previous standard, where participation was not required and no penalties were assessed. ^[11] Like the ADA, GINA contains an exception that permits employers to collect this information as part of a wellness program, as long as the employee's provision of the data is voluntary.^[12][13]

On January 6th, 2021, newly drafted rules related to the ADA and GINA wellness plan provisions were published. The EEOC proposed that employers can comply with ADA and GINA protections only if they offer no more than a de minimis (minimal) incentive to encourage participation in wellness programs outside of the group health plan if those programs collect employee health data.^[14] The proposed ADA rule states that it "adopts the view that allowing too high of an incentive would make employees feel coerced to disclose protected medical information to receive a reward or avoid a penalty." So nongroup wellness programs that include disability-related inquiries or medical exams "may offer no more than de minimis incentives to encourage employees to participate."^[15]The EEOC's proposed GINA rule used very similar language.[16] Under the 2021 proposed regulations, de minimis is defined with examples such as a water bottle or gift card of modest value.^[17]

However, on January 20th, 2021, the Biden administration withdrew the proposed regulations from publication in the Federal Register under a regulatory freeze pending review until Biden's newly appointed EEOC chair, Charlotte Burrows, reviewed and approved the rules.^[18]

Does Illinois labor law allow my job to ask medical questions? The Illinois Genetic Information Privacy Act ("GIPA") is highly similar to its federal counterpart GINA. With regards to employer wellness programs it provides,

An employer shall not use genetic information or genetic testing in furtherance of a workplace wellness program benefiting employees unless (1) health or genetic services are offered by the employer, (2) the employee provides written authorization in accordance with Section 30 of this Act, (3) only the employee or family member if the family member is receiving genetic services and the licensed health care professional or licensed genetic counselor involved in providing such services receive individually identifiable information concerning the results of such services, and (4) any individually identifiable information is only available for purposes of such services and shall not be disclosed to the employer except in aggregate terms that do not disclose the identity of specific employees. An employer shall not penalize an employee who does not disclose his or her genetic information or does not choose to participate in a program requiring disclosure of the employee's genetic information. 410 Ill. Comp. Stat. Ann. 513/25

GIPA remains largely unlitigated, specifically in employer/employee relationships. The Southern District of Illinois handed down judgment on a GIPA case in July of 2022 concerning the acquisition of a DNA testing company. Plaintiffs in Bridges argued that they did not consent or give permission to transfer their genetic testing and information derived from genetic testing to a third party or for the acquiring company to take possession of their data. ^[19]

While not directly related to employment, the court addressed the statutory language of GIPA and what it protects. The first clause, "no person may disclose," prohibits a person possessing genetic testing data from improperly disclosing that data to another. The second clause, "no person may ... be compelled to disclose," protects a person possessing genetic testing data from being compelled to disclose that data to another. While similar, the addition of the second clause ensures that individuals who undergo genetic testing are protected in two distinct ways: (1) by prohibiting third parties who possess their genetic data from improperly disclosing it, and (2) by shielding them from persons who seek to compel their genetic data for improper purposes. Accordingly, Section 30, in addition to the broad definition of "person," operates to ensure that any person in possession of genetic data (including both individuals undergoing genetic testing like Plaintiffs, and persons who obtained genetic data from those individuals) are protected against others who mishandle genetic data by either improperly disclosing it or improperly compelling it. Bridges v. Blackstone Grp., Inc., No. 21-CV-1091-DWD, 2022 WL 2643968, at *2 (S.D. Ill. July 8, 2022)

GIPA states that an employer shall not penalize an employee who does not disclose his or her genetic information or does not choose to participate in a program requiring disclosure of the employee's genetic information.[20]

What is necessary to prove discrimination under GINA? To prove discrimination under GINA, an employee would have to show that they provided genetic information as part of a wellness plan that was not voluntary. The Seventh Circuit has held that whether an employee’s participation is voluntary is a question for the finder of fact. Similar to other employment discrimination claims, an individual would first have to file a charge with the EEOC within 300 days of the date of the alleged discriminatory act and receive a “notice of right to sue” letter.^[21]

Under GINA, an employer can request genetic information about an employee or their family members when "health or genetic services are offered by the employer, including such services offered as part of a wellness program," but only if "the employee provides prior, knowing voluntary and written authorization."^[22] The 2010 GINA Rule forbade employers from exacting any penalties or applying any incentives conditioned on providing genetic information. Voluntariness under GINA is evaluated under similar factors as ADA voluntariness.

Thanks to our law clerk Hannah Moser for her assistance in researching and writing about GINA, GIPA and the ADA.