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23, My Employer & Me: On genetic testing, privacy, and employment

I’ve always been curious about my ancestry. That curiosity recently led me to contact the genetic testing provider 23andMe®, who provided me with the following option: For $100 more I could have my DNA tested for genetic health risks including late-onset Alzheimer’s and Parkinson’s Disease. This testing also determines whether or not I am a carrier for over 40 different conditions from cystic fibrosis to Zellweger syndrome. My interest was piqued.

Days later I found myself submitting a saliva sample—but not before signing several disclosure and acknowledgement forms. I acknowledged my understanding that 23andMe® does not diagnose health conditions. My test results would only inform me of whether I am a carrier for certain diseases and conditions. Nevertheless, the disclosures made me pause, especially the bold-font section titled “Genetic Information you share with others could be used against your interests.” The disclosure read:

“Genetic Information that you choose to share with your physician or other health care providers may become part of your medical record and through that route be accessible to other health care providers and/or insurance companies in the future. Genetic Information that you share with family, friends or employers may be used against your interests. Even if you share Genetic Information that has no or limited meaning today, that information could have greater meaning in the future as new discoveries are made. If you are asked by an insurance company whether you have learned Genetic Information about health conditions and you do not disclose this to them, this may be considered to be fraud.”1

As a plaintiff’s employment attorney, I am well aware of how an employee’s medical or mental health condition can be used against their interests. There are, however, state and federal safeguards in place to protect employees from the misuse of genetic data. For instance, Title II of Genetic Information Nondiscrimination Act (GINA) prohibits employers, including employment agencies, labor organizations, and joint labor-management training and apprenticeship programs, from using genetic information in making employment decisions.2 It restricts employers from requesting, requiring, or purchasing genetic information from or about employees.3 GINA also strictly limits the disclosure of genetic information in health insurance.4

Exceptions

Despite GINA’s broad prohibitions, six narrow exceptions allow covered entities to get genetic information. One exception permits an employer to obtain genetic information as part of health or genetic services, including wellness programs, although these incentive-based programs must be offered on a voluntary basis.5 Once an employee accepts such programs or services, the employer may obtain information from genetic tests and family medical history.

Notwithstanding the GINA protections, I was concerned that I may be required to disclose the results of my genetic test or face higher insurance premiums. That said, my experiences with incentive-based wellness plans have been positive. In fact, I have voluntarily completed health assessments to get gym membership discounts for regularly working out. On the other hand, penalizing those who don’t wish to participate in genetic testing made me uneasy. For better or worse, I had to ask myself whether I really wanted to know if I was a carrier of a rare and potentially debilitating disease. After weighing my options, I reasoned it would be better to know what potential health risks confront me. Having made up my mind, I clicked through the disclosures and submitted my saliva sample. Meanwhile, while waiting for my test results, headlines from Capitol Hill had me second-guessing my decision.

Federal legislation

In early March, the House Committee on Education and the Workforce introduced a bill titled Preserving Employee Wellness Programs Act (PEWPA).6 If enacted, the bill would allow employers to impose penalties on employees who decline to participate in genetic testing as part of a workplace wellness program. This is a radical departure from existing law, which dictates that employers can only provide incentives to employees who complete health-risk assessments. These incentives typically manifest themselves as insurance premium discounts. Due to these incentives, employment wellness programs have become quite popular, with 70 percent of companies nationwide offering a workplace wellness program in efforts to help their employees live healthier lives.7

Yet some reports predict that PEWPA, if enacted, could allow employers to impose penalties of up to 30 percent of the total cost of an employee’s health insurance on those who choose to keep such information private.8 The Kaiser Family Foundation even estimated that under the bill, a wellness program could charge employees an extra $5,443 in annual premiums if they choose not to share their genetic and health information.9 House Democrats and privacy advocates have argued the bill would eviscerate the protections of GINA and the 1990 Americans with Disabilities Act (ADA).10

On the other hand, PEWPA proponents argue it will rein in privacy protections from GINA and the ADA that compromise the effectiveness of workplace wellness programs, thereby preventing them from improving employee health and consequently employee productivity.11

One thing both sides of the PEWPA debate can agree on is that employees would be placed in an untenable position, forcing them to choose between privacy rights and lower health insurance costs.

This tension between privacy rights and low health costs is not new. In fact, incentive-driven wellness programs increased in popularity after the enactment of the Affordable Care Act (ACA) but before the Equal Employment Opportunity Commission (EEOC) issued new regulations to address the interaction between these programs, the ADA, and GINA. As a result, the EEOC brought three enforcement actions, including a local case, EEOC v. Honeywell Intern., Inc.12 In its motion for a preliminary injunction against Honeywell, the EEOC sought to enjoin the company from levying penalties and costs against employees who refuse to undergo biomedical testing in conjunction with its corporate wellness program.13 Judge Ann Montgomery, from the District of Minnesota, denied the preliminary injunction, noting, “[r]ecent lawsuits filed by the EEOC highlight the tension between the ACA and the ADA and signal the necessity for clarity in the law so that corporations are able to design lawful wellness programs and also to ensure that employees are aware of their rights under the law.”14

EEOC rules

In May 2016, the EEOC issued final rules addressing whether the financial impact employees may face by refusing to disclose medical and genetic information renders participation in workplace wellness programs “involuntary.” The final ADA rule provides that the use of a penalty or incentive of up to 30 percent of the cost of self-only coverage does not render “involuntary” a wellness program that seeks the disclosure of ADA-protected information.15 The final GINA rule permits employers to offer the same incentives to employees, but only for the disclosure of information about a spouse’s manifestation of disease or disorder as part of a health risk assessment in connection with a wellness program.16

Not long after the EEOC’s regulations were promulgated, they were challenged in AARP v. United States Equal Employment Opportunity Comm’n,17 and found unlawful because the EEOC had not considered factors relevant to whether penalties make wellness exams and inquiries coercive.18 Further, the court held the EEOC had not addressed concerns that workers may face financial hardship if they exercise their right to keep their information private.19 AARP successfully argued that the imposition of greater premiums on those who refuse to disclose genetic information constitutes penalties and thus violates GINA’s requirement that participation in employee wellness programs be voluntary.20

Minnesota workers enjoy even greater protections.21 Minn. Stat. §181.974 subd. 2(a). restricts employers and employment agencies from (1) administering a genetic test or requesting, requiring, or collecting protected genetic information regarding a person as a condition of employment; or (2) affecting the terms or conditions of employment or terminating the employment of any person based on protected genetic information.22 Likewise, §181.874 prohibits any person from providing or interpreting for an employer or employment agency protected genetic information on current or prospective employees.23 Unlike its federal counterpart, which only applies to employers with 15 or more employees, §181.874 applies to employers with one or more employees within the state and permits any aggrieved person to bring a civil suit in which the court may award:
(1) up to three times the actual damages suffered due to the violation; (2) punitive damages; (3) reasonable costs and attorney fees; and (4) injunctive or other equitable relief as the court may deem appropriate.24

And so I followed the debate surrounding PEWPA with interest while I awaited my results. The bill itself died not long after being introduced amidst one of several proposed ACA repeals. Although the future of the bill remains uncertain, many commentators expect it to be incorporated into future ACA-related measures twwhat do not affect federal spending.25 For now, workers need not sacrifice privacy for lower insurance premiums, and I can keep my genetic test results to myself.

While I am thankful for the insight my genetic test results have provided, I do intend to heed 23andMe’s advice and not share my results. No worker ought to be penalized for not sharing such information or placed at risk for sharing such information.

 


DUSTIN W. MASSIE is an employment attorney with Baillon Thome Jozwiak & Wanta LLP. He represents employees who have experienced discrimination, retaliation, harassment, or other illegal treatment in the workplace.

 

Notes

1 23andMe, Terms of Service, https://www.23andme.com/about/tos/ (last visited 10/4/2017).

2 Genetic Information Nondiscrimination Act of 2008, Pub. L. 110-233, 122 Stat. 881.

3 Id.

4 Id. 

5 Id., Sec. 202 (b)(2)(A).

6 Preserving Employee Wellness Programs Act, H.R. 1313

7 Alan Kohll, “Why More Employees Don’t Embrace Wellness Programs, And How to Fix it,” Forbes, (6/22/2017), https://www.forbes.com/sites/
alankohll/2017/06/22/why-more-employees-dont-embrace-wellness-programs-and-how-to-fix-it/.

8 Lena H. Sun, “Employees who decline genetic testing could face penalties under proposed bill,” Washington Post (3/11/2017), https://www.washingtonpost.com/news/to-your-health/wp/2017/03/11/employees-who-decline-genetic-testing-could-face-penalities-under-proposed-bill/. 

9 Id.

10 Janet Burns, “GOP Bill Could Force Employees to Undergo DNA Tests or Pay Huge Fines,” Forbes, (3/14/2017), https://www.forbes.com/sites/janetwburns/2017/03/14/gop-bill-could-force-employees-to-undergo-dna-testing-or-pay-thousands/

11 Id.

12 No. 14–cv–4517 (D. Minn. filed 10/27/2014).

13 E.E.O.C. v. Honeywell Int’l, Inc., No. CIV. 14-4517 ADM/TNL, 2014 WL 5795481, at *5 (D. Minn. 11/6/2014).

14 Id.

15 See ADA Rule, 81 Fed. Reg. at 31,133–34.

16 See GINA Rule, 81 Fed. Reg. at 31,144.

17 AARP v. United States Equal Employment Opportunity Comm’n, 2016 WL 6211325 (D.D.C., 10/24/2016).

18 See AARP v. United States Equal Employment Opportunity Comm’n, No. CV 16-2113 (JDB), 2017 WL 3614430, at *10 (D.D.C. 8/22/2017).

19 Id.

20 Id. at *11.

21 Minn. Stat. §181.974 (https://www.revisor.leg.state.mn.us/statutes/?id=181.974).

22 Minn. Stat. §181.974 subd. 2 (a).

23 Minn. Stat. §181.974 subd. 2 (b).

24 Minn. Stat. §181.974 subd. 1 (b) and Minn. Stat. §181.974 subd. 3.

25 See supra, note xi, Burns.

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