Oncology nurses are advocates for the ethical and legal use of patients’ genetic information. However, this information may be used to discriminate against individuals when they share it while participating in workplace wellness programs. Amendments to federal genetic discrimination laws may lead employees to being financially penalized for nondisclosure of their genetic information. This article stresses the importance of nurses being aware of these laws and pushing for policy revision to protect sensitive genetic information.
AT A GLANCE
- Oncology nurses, along with their patients and families, need to be informed about the provisions and limitations of federal genetic discrimination laws.
- Oncology nurses must educate patients about how participation in their employers’ workplace wellness programs gives employers and third parties access to their genetic information.
- Healthcare providers, particularly oncology nurses, should push for policy changes related to federal genetic discrimination laws (e.g., programs should be required to report their effectiveness to federal regulators, genetic information should be disclosed only to healthcare providers).
Oncology nurses routinely take family medical histories and follow clinical guidelines that may include recommendations that their patients undergo genetic testing for risk assessment, diagnosis, treatment, and management of malignancy. However, this genetic information (i.e., family medical history that includes the patient’s spouse and children and the patient’s genetic testing results) may inadvertently be disclosed to the patient’s employers and insurance companies, leading to potential discrimination (National Human Genome Research Institute [NHGRI], 2015; Sarata, 2015). Oncology nurses are charged with safeguarding their patients’ genetic information, as is reflected in the Oncology Nursing Society’s ([ONS’s], 2016) position statement on the subject, which states that oncology nurses “advocate for the ethical and legal use of genetic and genomic information” (p. 1). In addition, oncology nurses need to be aware that their patients’ genetic information, as well as their own, may be used for discriminatory purposes when they elect to participate in workplace wellness programs. The purpose of this article is to describe voluntary workplace wellness programs and how the genetic information of patients with cancer and their spouses, along with the genetic information of nurses, may be used within these programs to potentially discriminate against them.
The establishment of voluntary wellness programs, which are also known as employer-sponsored, employee, or workplace wellness programs, was recommended in the Patient Protection and Affordable Care Act of 2010 (PPACA), with provisions implemented in January 2014. Employers, particularly large employers with more than 200 employees, were encouraged to establish wellness programs to promote their employees’ health and prevent disease, with the ultimate goal of motivating employees to adopt healthier lifestyles (Roberts, 2017; Rosenbaum, 2011). After an employee voluntarily enrolls in a wellness program, he or she completes health risk assessment questionnaires and undergoes biometric screening (e.g., weight, blood pressure, cholesterol levels) (Roberts, 2017). The PPACA outlines recommendations to establish two types of voluntary wellness programs: participation-based and health-contingent wellness programs. Neither type of program is required to be evidence-based, and both are unregulated—organizations do not have to report the efficacy of their wellness programs (i.e., improvement in participants’ health) to any federal regulator (Hudson & Pollitz, 2017).
Participation-based wellness programs must be offered to all employees. Incentives for employee participation in this type of program may include free or reduced gym memberships, free diagnostic testing, and/or tobacco cessation programs. Employees are not penalized if they do not participate in the program or fail to adopt any of the program’s goals (Roberts, 2017).
Health-contingent wellness programs are to be “reasonably designed” (which is itself an undefined term in PPACA) and must be offered to the employee at least once a year to change his or her health behavior(s). This type of program must be made available to “similarly situated” (another undefined term in PPACA) employees and must give reasonable alternatives for the employee to achieve the program’s goals. Health-contingent wellness programs require that the employee meet certain targets (such as those related to weight loss, exercise, and tobacco cessation) to reap its incentives (Hudson & Pollitz, 2017). However, incentives for employee participation in this type of wellness program are largely financial, such as a reduction in the employee’s contribution to a group health insurance plan or another financial reward or gift (Roberts, 2017).
For a wellness program to be considered voluntary, the employer cannot require the employee to participate, deny an employee health insurance for not participating, restrict an employee from choosing an alternative health plan (one without a wellness program), or take any negative action against an employee who chooses not to participate in a wellness program or does not meet the program’s health goals. Results from the 2016 Kaiser Family Foundation employee health benefits survey indicated that more than 75% of large employers collect health information from their employees when they participate in some type of wellness program, and 50% of those large employers offer some sort of incentive to participate. Eight percent of large employers offered health-contingent wellness programs, but that number is expected to increase over time (Pollitz & Rae, 2017).
In addition, disclosure of genetic information is a potential risk because many large employers contract with third-party companies that provide web-based wellness programs. These third parties, also known as digital wellness program vendors, may collect employees’ biometric data and use these data to design workplace health interventions; they may also share employees’ personal information, including email addresses, with business partners for marketing purposes (Hancock, 2015; NHGRI, 2017). These web-based wellness programs obtain passive authorization from participants to access employee health information, including past insurance claims and medical records; this is often done when individuals check a box agreeing to lengthy terms of service (Genetic Alliance, 2016; Hudson & Pollitz, 2017). Lengthy privacy policies are also common. Examples of terms of service and privacy policies are available at www.werally.com/corporate/terms/us and www.werally.com/corporate/privacy, respectively.
Genetic Discrimination Laws and Wellness Programs Before 2017
Three major federal laws exist that prevent discrimination in the workplace based on genetic information: the Americans With Disabilities Act of 1990 (ADA), the Health Insurance Portability and Accountability Act of 1996 (HIPAA), and the Genetic Information Nondiscrimination Act of 2008 ([GINA], 2008; Pollitz & Rae, 2017). In regard to wellness programs, the ADA does allow for voluntary medical histories to be obtained if doing so is part of an employee health program available to all employees. HIPAA includes privacy protections for personal health information when employees are applying for an employer-sponsored health insurance plan (Hudson & Pollitz, 2017). GINA allows employers with more than 15 employees to request but not require that employees provide genetic information; however, this request may be made only through a voluntary workplace wellness program. In addition, GINA states that an employee who chooses not to provide his or her genetic information through a voluntary workplace wellness program should not be penalized (Genetic Alliance, 2016). Per the ADA and GINA, employers can acquire only deidentified, aggregated health information from their wellness programs (Roberts, 2017).
Genetic Discrimination Laws and Wellness Programs After 2017
On May 17, 2016, the Equal Employment and Opportunity Commission, despite objections from more than 2,900 individuals and national organizations (GINA, 2008) amended the ADA’s and GINA’s provisions regarding the rules of voluntary wellness programs; these changes went into effect on January 1, 2017. As a result, wellness programs may now offer limited incentives for employees’ disclosure of disorders or diseases affecting them as well as their spouse (NHGRI, 2017). Although employees who refuse to divulge their genetic information cannot be fired or denied health benefits, employers offering health-contingent wellness programs may reduce the individual employee’s cost for a self-only insurance plan by as much as 30% of the employee’s cost if he or she participates. If the employee and the employee’s spouse share their health information, they could have as much as a combined 60% reduction in their cost for health insurance (NHGRI, 2017; U.S. Equal Employment Opportunity Commission, 2016); their health insurance premiums may also be reduced by as much as 50% for tobacco cessation (Roberts, 2017). The employer can choose the provisions of the voluntary wellness program; employees who decide not to share their genetic information may be penalized with an increase in their health insurance premium, whereas those who take part in the program may be incentivized with a decrease in the premium (NHGRI, 2017).
Such incentives can provide significant cost savings to employees and their families. According to a 2017 report by the Kaiser Family Foundation, when considering the average cost of a group health plan, the 30% reduction in health insurance premium cost for the individual employee could be as high as $1,930 annually. If the employee’s and the spouse’s information is shared, the cost savings could be as high as $3,860 annually (Pollitz & Rae, 2017). In addition, among large employers surveyed in 2016, 56% set their maximum incentive (the maximum dollar amount that employers can use as an incentive to employees to increase participation in their wellness programs) at more than $500, and 27% set their maximum incentive at more than $1,000 (Pollitz & Rae, 2017).
Implications for Nursing
It is now legal for workplace wellness programs to gather an employee’s family medical history, which is the least expensive and most accessible pathway to gain access to genetic information. The legalization of financial incentives for employee participation in health-contingent wellness programs may increase the likelihood that employees will provide their genetic information to employers and wellness program vendors, which also increases the chances it may be used in discriminatory ways (Genetic Alliance, 2016). According to Title II of GINA, it is legal to discriminate against individuals applying for disability, long-term care, and life insurance, which may be offered by employers (NHGRI, 2015). As a result, the disclosure of an individual’s and a spouse’s genetic information may involve additional costs for the employee if the employer refuses to offer him or her employer-sponsored disability and life insurance. Patients and their families need to be educated on GINA’s provisions, as well as its limitations.
Oncology nurses are charged with protecting their patients’ genetic information. This protection allows patients to make informed decisions about providing their family medical history and undergoing genetic testing without the fear that this information could be used against them by their employers. Patient autonomy should also be preserved by oncology nurses, such as when patients refuse to undergo genetic testing that may reveal future health risk, regardless of whether interventions are available to mitigate that risk (ONS, 2016). Oncology nurses also need to be aware of and knowledgeable about recent amendments to the ADA and GINA that allow employers to use financial incentives to persuade employees to disclose their family medical history and/or undergo genetic testing that may not be medically or ethically appropriate (NHGRI, 2017; Rosenbaum, 2011). Oncology nurses must be knowledgeable about legislative changes and current laws, and they should be proactive, educating patients and their families about these changes and the potential risks of participating in workplace wellness programs.
Healthcare providers, including oncology nurses, need to advocate for policy changes so workplace wellness programs are required to report their data to federal regulators to show their effectiveness in promoting health and preventing disease. In addition, employees’ genetic information, gathered by workplace wellness programs, should be shared only with healthcare providers delivering care to the patient. Employers must also waive penalties for employees and their spouses who refuse to disclose their genetic information (Hudson & Pollitz, 2017).
In a letter to Virginia Foxx, a U.S. representative from North Carolina who introduced H.R. 1313, the Preserving Employee Wellness Programs Act, which would allow employers to offer health insurance premium discounts to employees who participate in workplace wellness programs, Susan Schneider (2017), then president of ONS, stated her opposition. Schneider (2017) wrote that ONS is against “employer coercion of employees to share genetic information and use of that information to discriminate against employees” (p. 1). Instead, as Schneider (2017) noted, ONS promotes education of patients and the public about the benefits and the limitations of genetic testing, as well as advocates for cancer prevention.
The goals of workplace wellness programs are to promote health and prevent disease by encouraging employees to adopt healthy lifestyles. However, the methods used to obtain health information, including genetic information, of employees and their spouses are questionable. Employers with workplace wellness programs may now offer significant monetary inducements to encourage employees and their spouses to disclose their genetic information. This genetic information, shared with third-party web-based wellness programs, may then be disseminated to these programs’ business partners for marketing purposes, potentially affecting the genetic health privacy of employees and their spouses. To date, workplace wellness programs have not shown their effectiveness; they are not required to be evidence-based or report their results to any federal regulator.
Oncology nurses, as members of the oncology team, have access to their patients’ genetic information and should take care to preserve their patients’ privacy and the confidentiality of this information. However, nurses must be aware that their own genetic information, as well as their patients’ genetic information, may be at risk for disclosure because of changes in federal genetic discrimination laws in regard to workplace wellness programs.
About the Author(s)
Mary Beth Steck, PhD, FNP-BC, is an adjunct assistant professor in the School of Nursing at Clemson University in South Carolina. The author takes full responsibility for this content and did not receive honoraria or disclose any relevant financial relationships. Steck can be reached at firstname.lastname@example.org, with copy to CJONEditor@ons.org.
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