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Incentivized employee wellness programs: Is our genetic privacy at risk?

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By: Monica Markovski, Ph.D.

CC0 Public Domain

In March, new Congressional legislation was introduced that would legally allow companies to request employee and family medical history as part of financially incentivized wellness programs. These types of wellness programs are now common in the workplace. They reward employees who provide health information and participate in health assessment programs and biometrics testing. In theory, these programs have laudable goals. Companies would have healthier, more productive workers and a more stable workforce. Absences would be reduced, and rising healthcare costs and other related expenses would be lowered (1). Employees would also benefit with their own improved overall health, reduced health care premiums and costs, and even monetary rewards. Such financial incentives encourage employee participation. Research has shown that participation in wellness programs nearly doubled when non-incentivized programs offered a monetary reward. When the reward was tied to reductions in health care premium costs or adjustments, participation more than doubled (2).

Two companion bills under the Preserving Employee Wellness Act of 2015 would seek “to clarify rules relating to nondiscriminatory employer wellness programs”. Drafted by John Kline (US Representative, R-MN) and Lamar Alexander (US Senator, R-TN), this Act would allow companies that seek to promote worker health and disease prevention to legally obtain genetic and medical information about employees and their families as an employee participates in an incentivized wellness program (3). This bill is in direct opposition to the Genetic Information Nondiscriminatory Act (GINA) and poses a risk to its privacy protections.

In 2008, GINA, which prohibited workplace discrimination based on genetic information, passed both the House of Representatives and the Senate with overwhelming bipartisan support. Here, genetic information was defined as information obtained from genetic tests from individuals and their family members or the manifestation of a disease or disorder. Thus, a family’s medical history falls under “genetic information” because such information can be directly tied to one’s own or a relative’s own disease predisposition. For example, mutations in the gene BRCA1 have been linked to breast cancer, and these mutations generally run in families. Providing one’s own genetic information inadvertently then also supplies that of one’s relatives. Title II of GINA more specifically prohibits employers “from requesting, requiring or purchasing genetic information, and strictly limits the disclosure of genetic information” to ensure genetic privacy protection for employees (4).

Many health advocacy groups are concerned that the Preserving Wellness Act of 2015 invades the privacy protections afforded by GINA. In a letter to the House of Representatives Committee on Education and Workforce, fifty-three non-profit patient advocacy groups strongly opposed any legislation that legally allows employers to question or inquire about an employee’s private genetic or medical information (through health risk assessments, for example) and penalizes employees who choose not to provide it (5). Under GINA, questionnaires like health risk assessments (HRAs) that ask for such information are prohibited. Moreover, providing incentives or rewards to employees that participate in and complete these HRAs discriminates against those employees who choose not to offer their medical information. If the genetic information provided by the employee shows that he or she is at risk for, or predisposed to a certain disease, then these wellness programs can provide incentives for participating in efforts to manage the disease. However, to comply with both GINA and the Americans with Disabilities Act (ADA), the program then must also provide similar incentives for those employees who choose not to share their genetic information, but who are at risk for developing a particular condition due to their lifestyle or encoded by their genetic information (2).

One specific exception to the privacy protections afforded in GINA allows a company to obtain genetic information from employees as part of health or genetics based services, like wellness programs, that are offered voluntarily by the employer. Here, the employee has the right to choose whether to provide his or her genetic information. While incentivized wellness programs reward participation, they also enforce harsh penalties when employees do not comply with the program. In three lawsuits filed in federal court against three different companies, the Equal Employment Opportunity Commission (EEOC) claims that such incentivized programs that give rewards for those who participate and discriminate against those who opt out are not voluntary due to large and substantial fines imposed on those employees who do not participate (1, 6). These companies (Honeywell International, Orion Energy Systems, and Flambeau) are alleged to simultaneously violate the ADA, which explicitly prohibits employers from requiring a medical examination or asking employees disability-related questions (7, 8). The EEOC claims that Honeywell International requires its employees and covered dependents to undergo biometric testing or face financial losses that can add up to thousands of dollars in lost employer health savings account contributions and surcharges. Under these conditions, the wellness program does not seem to be ‘voluntary’. Orion Energy Systems allegedly required an employee who declined to participate in the company’s wellness program to cover all of his or her own health plan benefit premiums, plus a monthly penalty. Shortly after, the employee was fired (9). Also, in the lawsuit against Flambeau, Inc., a Wisconsin-based plastics manufacturing company, an employee who did not submit to biometric testing and an HRA simply had his medical insurance canceled and was required to pay all premium costs (10). In contrast, employees who participated did not have their insurance canceled and only paid a quarter of premium costs. In all of these cases, companies retaliate against an employee for nonparticipation by subjecting the employee to severe penalties for noncompliance. These conditions, the EEOC argued, render incentivized wellness programs functionally involuntary and violate the ADA (8). This can also be interpreted as being in direct violation of GINA.

Many critics of GINA believe the original legislation was overly broad and did not go far enough to protect those persons whose diseases have manifested, but are not physically disabled. More recently, the Affordable Care Act (ACA) addressed this concern and prohibited health insurers from discriminating against those with preexisting conditions, however the ACA fails to address discrimination in the workplace. To further complicate matters, the ACA also encouraged employers to offer benefits like employee wellness programs, but did not discuss the conflict that arises with GINA when these programs use HRAs and biometric tests.

Safeguarding private genetic information and prohibiting genetic discrimination have become even more important since the enactment of GINA in 2008 as overall health concerns increase and initiatives are taken to provide a customized healthcare experience for each person. GINA was established to both prevent individuals from being genetically discriminated against and to alleviate fears about potential genetic discrimination (11), and the Preserving Wellness Act of 2015 presents a new possibility to counteract these effects. This fear extends to participating in biometric testing and may prevent some individuals from taking part in clinical research studies that look at how genomic information can be used to prevent and treat disease. Current and future privacy protections are necessary to alleviate these fears of genetic discrimination. Legislation such as GINA and the ADA are required so that the research that underlies the translational science of genomic medicine can move forward without compromising individual privacy.

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Written by sciencepolicyforall

June 3, 2015 at 9:00 am

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