Workplace Genomic Testing: What Do Company Websites Say about Federal Privacy and Anti-Discrimination Laws? Open Access

As of 2023, over 53% of the US population received health insurance through their employer [1]. Many employers, particularly large ones, offer self-funded plans, meaning that the employer directly pays for their employees’ healthcare services [2]. Thus, employment and health are inextricably intertwined and, for employers, increased health costs of their workforce equate to more spending and decreased profits. Workplace wellness programs offer one theoretical solution to help lower employers’ healthcare costs [3]. While some research suggests that these workplace wellness programs do not offer significant benefit [3, 4], they continue to be offered to employees, and thus, it is important to understand their operations and impact [5].

Workplace wellness programs are advertised as an effective way to decrease costs and improve employee health by offering voluntary services such as health risk assessments, biometric screening, smoking cessation, fitness, and nutrition programs [3, 4, 6]. Over the past decade, genetic testing has also been offered within workplace wellness programs, defined here as workplace genomic testing (wGT) [7]. While some companies have publicly identified themselves as offering wGT, public-facing company websites either do not make it clear that this service is offered [8] or have not updated website information since 2015 [7]. Such testing could, for example, identify employees at elevated risk for common, preventable conditions such as cancer and heart disease. Some companies offer other testing, such as ancestry, nutrigenetic, and other nonmedical results. However, it is still unclear how many US companies have added wGT to their wellness programs or how many employees choose to undergo such testing [8, 9].

Several federal-level policies promote and regulate the use of workplace wellness programs in the US, while also prohibiting genetic discrimination by employers and health insurers. For example, the 1996 Health Insurance Portability and Accountability Act (HIPAA), the 2008 Genetic Information Nondiscrimination Act (GINA) and the 2010 Affordable Care Act (ACA), collectively limit discriminatory use of genetic information in the contexts of employment and health insurance, but have also altered their policies to encourage workplace wellness programs [10]. States such as Florida have begun to enact legislation to limit the ability of life, long-term care, and disability insurers to deny coverage or charge higher premiums based on genetic information [11]. Most states, however, still allow these insurers to deny coverage or charge higher premiums based on genetic information, although it is unclear whether and to what extent insurers are using genetic information for these purposes [11]. HIPAA protects one’s private health information and prohibits discriminatory premium differences in group health premiums based on one’s health information, including genetic information and family history information [12, 13]. The ACA expands upon HIPAA’s discrimination protections for both individual and group health plans [14]. Thus, while HIPAA has provided some protection against premium differences in the group market for those with a pre-existing condition, the ACA provides broader premium protections.

Despite these broad anti-discrimination protections, both HIPAA and the ACA make an exception for workplace wellness programs – employers may offer different health insurance premium amounts based on employee participation in a wellness program. The ACA, for example, permits workplace wellness programs to offer incentives to employees who complete the program. Potential incentives include a 30% reduction of an employee’s healthcare premium costs. Generally, GINA forbids employers from collecting genetic information; however, there is an exception for workplace wellness programs, provided they are voluntary. GINA has been interpreted by legal scholars and a court reviewing the issue as prohibiting workplace wellness programs that include wGT from offering any incentives for program completion, as offering incentives could unduly influence employees’ participation [10, 15, 16]. However, given recent regulatory updates and case law, the allowable amount of incentives is in limbo, making it uncertain whether employers wishing to offer wGT would be able to offer any incentives to participate [17]. More recently, H.R. 1313 attempted to eliminate the cap on the use of incentives as well as permit employers to collect individual wGT results from workplace wellness programs or wGT vendors [10]. This bill was never voted on in either chamber of Congress, despite making it out of the relevant House Committees in December 2017.

Employees considering participation in wGT as part of workplace wellness programs should be aware of legal protection of their personal genetic information and how it can and cannot be used. Given the relevance of HIPAA and GINA for informed decision-making, employers offering wGT should ideally inform employees of these health policies prior to collecting any genetic data. It is unclear, however, whether and to what extent such information is being provided. A prior study investigated whether the vendors themselves displayed information about HIPAA or GINA [18] but not whether the companies offering wGT to their employees themselves display information regarding HIPAA or GINA. Company websites provide one important resource for making employees – and the public at large – aware of important health policies governing workplace wellness programs in general and wGT services in particular. We, therefore, sought to systematically review the websites of companies offering these services to determine if they included reference to HIPAA and GINA.

This study is part of a larger NHGRI-funded study of the US landscape, and employee and employer perspectives regarding wGT [9]. The goal of this substudy is to identify companies (and the genetic testing vendors with whom they contract) that offer wGT to their employees through a systematic, search-based landscaping analysis. The first phase of this study was to examine which vendors and which employers are offering wGT to employees in the context of wellness programs [8]. Our sampling strategy included a range of private and public sector employers, selected through both systematic and search-based methods. We analyzed the websites of 420 companies, which included (a) 140 privately held companies (systematically sampled from the 2019 Forbes list of largest privately held companies), (b) 140 publicly held companies (systematically sampled from the 2019 Forbes list of largest publicly held companies), (c) 104 hospitals/hospital systems by state (top 2 in each state, plus the District of Columbia and Puerto Rico), and (d) 36 companies that had evidence that they offer/have offered wGT based on press releases and other publicly available information from vendors of wGT [8]. As part of the landscaping work, we analyzed publicly available websites of a broad sampling of employers and utilized search strings in Google and business databases [8] to identify whether HIPAA or GINA were mentioned on either vendor or employer websites in the context of wGT. The inclusion criteria for companies are (a) having a US headquarters and (b) publicly available evidence of offering wGT to their employees. The inclusion criteria for vendors are (a) having a US headquarters and (b) publicly available evidence of offering wGT to companies for company employees. This search was conducted from February 2021-October 2021. We used several search strings to identify whether HIPAA or GINA was mentioned (Table 1). The method of using search strings to identify whether HIPAA or GINA was mentioned on company websites was implemented for all 420 companies.

Our search for wGT programs on company websites found that 50 of 420 (12%) companies had evidence of offering wGT (see online suppl. Table S1; for all online suppl. material, see https://doi.org/10.1159/000546189). In terms of policy notification, 32 of 50 companies (64%) offering wGT in wellness programs mentioned HIPAA and none of the companies mentioned GINA as it relates to wGT in their wellness programs. As seen in Figure 1, 75% (27/36) of the vendor identified companies mentioned HIPAA, whereas none (1/4) of the systematically sampled privately held companies mentioned HIPAA in the context of their wellness programs that offer wGT. Additionally, of the 10 systematically sampled publicly held companies that offer wGT, 4 mentioned HIPAA within the context of their wellness programs. No hospital/hospital system had evidence of offering wGT as part of wellness programs. GINA was not mentioned on any of the company websites, including within the available terms and conditions for wGT.

We found very little publicly available evidence that GINA was mentioned in the context of company website descriptions of wellness programs offering wGT. However, there is also little evidence that companies are offering wGT within the context of wellness programs in the first place [19]. Of the companies we identified as offering wGT to their employees (12% of all companies assessed), very few publicly outline the protections afforded by HIPAA or GINA. In contrast, previous research identified 15 wGT vendors, of which 9 mentioned HIPAA on their websites and only 2 mentioned GINA [18]. The relative absence of HIPAA and GINA-related information from company-curated documentation is evidence of how companies communicate with their employees regarding wGT and what information they prioritize for their employees’ consideration. These data suggest that companies are not prioritizing employee knowledge of legal protections for wGT. This lack of transparency potentially limits the information available to employees and their ability to weigh the risks and benefits of participation in wGT, given their to know the extent and limitations of their legal protections under HIPAA and GINA. Education about GINA in particular would be important to provide given the general lack of public knowledge about protections afforded under this legislation [19]. Greater transparency would enable advocates, researchers, and government enforcement agencies to assess the risks and benefits of such programs and to proactively identify potentially problematic program designs. Knowledge about legal protections could be an important factor in employee decision-making as there is evidence from other contexts that individuals have declined testing or decided not to participate in genetic research for fear of genetic discrimination [20]. Additionally, at a large biomedical research institution, employees specified that before making their decision to participate in wGT they would want to know about the relevant laws and policies to protect their privacy and the confidentiality of their genetic test results [5, 21]. It is possible that employees undergoing wGT are receiving information about HIPAA and GINA through information sources that were beyond the scope of this review. Nevertheless, it seems likely that more transparency from US companies is an important part of ensuring that employees will have the information they need to make more informed decisions about wGT.

Like direct-to-consumer genetic testing, wGT can offer individual benefits, but can also result in privacy concerns as one’s genetic information can be shared by the vendor that is conducting the testing, depending on what is stated in user agreements [18]. However, with wGT, the stakes are perhaps even higher, given that aggregate genetic information can be shared with one’s employer and, depending on the state, affect one’s life insurance, long-term care insurance, and disability insurance. These effects can be in the form of using genetic information to set higher premiums or decline applications for non-health insurance [11]. Such concerns are understandable given prior legal cases in which employers sought to use genetic information for potential discrimination in the workplace, such as in Bloodsaw v. Lawrence Berkeley Laboratories (1998) and Equal Employment Opportunity Commission (EEOC) v. Burlington Northern Railway Company (2001) [9]. Furthermore, even if HIPAA and GINA were mentioned on the vendor or company websites or within the terms and conditions, it is unclear whether the employee would read the information, or that the information would be provided in an understandable manner. Recent research shows that although public concerns about genetic discrimination are common, many do not know that GINA exists or about the protections that it provides [20]. Indeed, if individuals have knowledge of GINA, they often tend to assume that GINA is more protective than it actually is [19].

An important limitation of this study is that analyses were limited only to information provided on public-facing company websites. It is likely that companies offering wellness programs provide additional information for employees to consider before undergoing wGT, and we do not know how often HIPAA and GINA are being addressed in these materials, during genetic counseling (if offered), or within informational sessions. However, company-provided materials are indicative of how the company chooses to frame the service for their employees. Another limitation of our study is that we only assessed whether HIPAA and GINA were explicitly stated on company websites, rather than how well or extensively the protections they afford were actually explained.

Ultimately, it is imperative that these policies are clearly communicated when offering wGT in the context of wellness programs. The US Department of Health and Human Services (HHS), through the Office for Civil Rights (OCR), is responsible for enforcing HIPAA, while the EEOC is responsible for enforcing the employment provisions of GINA. To improve transparency, it would be helpful if these bodies created additional stipulations for companies and vendors that offer wGT to disclose that they are compliant with both HIPAA and GINA regulations, in addition to offering employees a brief description of what these federal policies protect. While such disclosures would not enforce compliance with the regulations, they would enhance employees’ understanding of their protections, helping them make informed decisions about participation in wGT. For example, the Office of Human Research Protections developed guidance for explaining GINA during the informed consent process in research settings [22]. Similar guidance for workplace wellness programs could be helpful. Such practices would serve to enhance informed decision-making. The legal landscape of wGT should be findable, accessible, and understandable by the public in order for employees to assess the benefits and risks of participating in wGT.

The INSIGHT @ Work Consortium includes the following core team members, in addition to the named authors: Elizabeth Charnysh, Nicole Crumpler, W. Gregory Feero, Rebecca Ferber, Veda N. Giri, Katherine Hendy, Amy Leader, Charles Lee, Sarah McCain, Alexandra McClellan, Kerry Ryan, Kunal Sanghavi, Kayte Spector-Bagdady, and Wendy R. Uhlmann. The consortium is supported by the advisory board members Kyle Brothers, Ellen Wright Clayton, Patricia Deverka, Thomas Ellis, Aaron Goldenberg, Susan Mockus, Cynthia Casson Morton, Jens Rueter, and Brett Witham, along with stakeholder workgroup members Ethan Bessey, Erynn Gordon, LaTasha Lee, Jessica Roberts, and Fatima Saidi.

A statement of ethics is not applicable because this study is based exclusively on publicly available data.

J.S.R. was a member of the journal’s Editorial Board at the time of submission. The authors have no conflicts of interest to declare.

This work was supported by grants from the National Human Genome Research Institute (R01HG010679, K01HG010496).

B.C. and D.J.H.M. conceived the idea for the study. B.C. and K.C. collected the data. B.C., A.E.R.P., and D.J.H.M. wrote the manuscript with consultation from J.S.R. and A.V. All authors reviewed and approved the final version of the manuscript. J.S.R. led efforts to secure funding for the study.

The authors confirm that the data supporting the findings of this study are available within the article (and/or) its supplementary materials (see online suppl. Table S1). Further inquiries can be directed to the corresponding author.