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Help us Oppose EEOC Rule with Implications for GINA

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Dear friends and colleagues,

In the wake of the introduction of the Preserving Workplace Wellness Programs Act into Congress, the Equal Employment Opportunity Commission (EEOC) released a proposed rule regarding the Americans With Disabilities Act (ADA) and wellness programs. Unfortunately, this rule, if finalized in its current form, will have much the same effect as the bill and would roll back longstanding nondiscrimination protections for American workers.

We are circulating the sign-on letter below and asking for your organization's support in opposing the Proposed Rule. The deadline to sign on is Wednesday, June 17th.

In effect, the EEOC Proposed Rule redefines what constitutes “voluntary” participation in a wellness program and would allow wellness programs to penalize employees up to 30% the cost of their entire health insurance cost if they refuse to answer questions related to their health status. To put this in real terms, the average cost of a health plan in 2014 was approximately $6000 for a single worker. This would allow employers to penalize employees who refuse to participate in wellness programs upwards of $1800 for an individual. Some workers with higher cost insurance could face even larger penalties.

While the current Proposed Rule only applies to the ADA, EEOC has signaled that it intends to apply this standard to GINA as well in forthcoming regulations to be issued in July. At a hearing held on May 19th, 2015, EEOC Chair Jenny Yang stated that EEOC intends to release rules that “harmonize ADA and GINA requirements with HIPAA and the ACA…".

GINA clearly states that workplace wellness programs cannot tie financial incentives or penalties to questions which request genetic information from employees, yet the ADA proposed rule and forthcoming GINA rule will undermine these important and longstanding protections. If employees wish to have affordable health insurance, under these rules they can be forced to give up their private medical and genetic information to their employers.

We hope that you will join us in opposing the Rule. Please sign your organization on to the letter below.

-The Genetic Alliance Team



June 19, 2015

The Honorable Jenny R. Yang, Chair
The Honorable Constance S. Barker, Commissioner
The Honorable Chai R. Feldblum, Commissioner
The Honorable Victoria A. Lipnic, Commissioner
The Honorable Charlotte A. Burrows, Commissioner

Equal Employment Opportunity Commission
131 M St. NE
Washington, DC 20507

RE: Equal Employment Opportunity Commission Proposed Rule “Amendments to Regulations Under the Americans with Disabilities Act

(Regulatory Information Number: 3046-AB01)

To the Commissioners of the Equal Employment Opportunity Commission:

We the undersigned organizations representing patients, health care providers, disability rights activists and researchers appreciate the opportunity to comment on the Proposed Rule regarding the Americans with Disabilities Act (ADA) and employer-sponsored wellness programs. We are gravely concerned that the proposed rule would erode long-standing and important protections afforded to employees under the ADA and would pave the way for weakening the Genetic Information Nondiscrimination Act (GINA). We strongly oppose any policy that would allow employers to inquire about employees’ private genetic information or medical information unrelated to their ability to do their jobs and penalize employees who choose to keep that information private. Therefore, we urge the Commission to withdraw this rule and maintain strong civil rights protections for all Americans.

The ADA was signed into law in 1990 by President George H.W. Bush after receiving wide bipartisan support in Congress. The law is intended to protect all Americans from workplace discrimination on the basis of disability. Importantly, the law clearly states that employers are prohibited from subjecting employees to medical inquiries and examinations that are not job-related and consistent with business necessity, unless those inquiries are voluntary and asked as part of an employee health program.

In this context, voluntary means exactly that; an employee would be free from coercion, financial or otherwise, and would only provide their medical information if they chose to do so. Indeed, it has been the EEOC’s position for the last 15 years that “a wellness program is ‘voluntary’ as long as an employer neither requires participation nor penalizes employees who do not participate.”[1]

However, this proposed rule seeks to redefine “voluntary” medical inquiries or exams that are part of wellness programs as ones where employees may be offered incentives or penalties of up to 30 percent of the total cost of employee health insurance coverage if they decline to answer or be examined. To put this in real terms, the average cost of a health plan in 2014 was approximately $6000 for a single worker[2]. This would allow employers to penalize employees who refuse to participate in wellness programs upwards of $1800 for an average individual; for some people with higher cost health insurance, the penalties could even exceed $3000. Financial incentives of this magnitude are hardly voluntary and instead will allow employers to coerce employees into disclosing medical information they would otherwise want to keep private. Employees will have no choice but to disclose their private health information if they want access to affordable health insurance. It is unclear why EEOC previously defined this type of practice as coercive, yet now seeks to make it the definition of “voluntary.”

Redefining voluntary in this way forces individuals to turn over sensitive disability and health related information to their employers, making it harder to prevent employment discrimination against a group that already has the lowest employment rates of any group tracked by the Bureau of Labor Statistics. ; it also sets a dangerous precedent. The EEOC has already interpreted the term “voluntary” in the parallel context of wellness program questions seeking genetic information differently from its interpretation in the Proposed Rule—and in a way that reflects Congress’s intent to ensure that such inquiries are not conducted in a coercive manner.  It is unclear how the EEOC can square these two radically different interpretations of “voluntary” wellness program inquiries in these two similar statutes. We are concerned this dissonance could lead the EEOC to abandon its correct interpretation of voluntary under GINA and apply this new definition of voluntary to employer requests for genetic information, rolling back strong protections explicitly laid out in the GINA regulations. The GINA regulations state unequivocally that employers:

“…may not offer a financial inducement for individuals to provide genetic information, but may offer financial inducements for completion of health risk assessments that include questions about family medical history or other genetic information, provided the covered entity makes clear, in language reasonably likely to be understood by those completing the health risk assessment, that the inducement will be made available whether or not the participant answers questions regarding genetic information.”[3]

We strongly urge the Commission to retain the definition of voluntary as laid out in the GINA regulation and apply the same standard to the ADA regulations and employer requests for medical information.   

Wellness programs are fully able to encourage healthy behaviors within this framework: they need not collect and retain private genetic and medical information to be effective. They do not need exemptions from important federal civil rights statutes like GINA and the ADA, and individuals ought not to be subject to steep financial pressure from their health plans or employers to disclose their or their families’ genetic and medical information. Therefore, we, the undersigned, strongly urge you to preserve the nondiscrimination protections afforded to all Americans by the ADA and GINA and withdraw this deeply flawed Proposed Rule.


(Note: at this time we are only accepting organizational signers. Please be sure you are authorized to sign for your organization.)

[1] 42 U.S.C. § 12112(d); 29 C.F.R. §§1630.13, 1630.14; EEOC Enforcement Guidance on Disability-Related Inquiries and Medical Examinations of Employees Under the ADA (“Enforcement Guidance”), Question and Answer 22, available at

[2] Kaiser Family Foundation. 2014 Employer Health Benefits Survey. Available at:

[3] 29 C.F.R. § 1635.8(b)(2)(ii)


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