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# Voluntary workplace genomic testing: wellness benefit or Pandora’s box?

## Abstract

Consumer interest in genetic and genomic testing is growing rapidly, with more than 26 million Americans having purchased direct-to-consumer genetic testing services. Capitalizing on the increasing comfort of consumers with genetic testing outside the clinical environment, commercial vendors are expanding their customer base by marketing genetic and genomic testing services, including testing for pharmacogenomic and pathogenic variants, to employers for inclusion in workplace wellness programs. We describe the appeal of voluntary workplace genomic testing (wGT) to employers and employees, how the ethical, legal, and social implications literature has approached the issue of genetic testing in the workplace in the past, and outline the relevant legal landscape. Given that we are in the early stages of development of the wGT market, now is the time to identify the critical interests and concerns of employees and employers, so that governance can develop and evolve along with the wGT market, rather than behind it, and be based on data, rather than speculative hopes and fears.

## Genetic testing within workplace wellness programs

In the 1970s, employers began offering workplace wellness programs promoting healthy behaviors among their employees39 to reduce health costs and to improve employee well-being and work productivity. The Health Insurance Portability and Accountability Act (HIPAA) in 1996 and Affordable Care Act (ACA) in 2010 set rules allowing for the use of workplace wellness programs. While both these laws prohibit health plans from adjusting premiums based on health status, they have an exception for wellness programs. The laws arguably encourage wellness programs by allowing employers to incentivize employee participation. After the implementation of the ACA, some wellness programs offer incentives or impose penalties that are equal to 30% of the cost of health insurance premiums under the employer’s plan, and as high as 50% for smokers. This can translate to the gain or loss of thousands of US dollars for individuals and families alike16,40, raising concerns that these programs can be coercive41.

wGT could fit well into workplace wellness programs since genetic and genomic testing may offer employees the opportunity to identify genetic risks and mitigate or prevent future disease (and potentially, associated healthcare costs). Indeed, a growing number of employers are offering, or considering offering, wGT as part of their wellness programs17,20. However, wGT brings with it both previously identified and new ELSI concerns. In response, some ELSI researchers focusing on genetic testing in the workplace have shifted their work from genetic monitoring and vulnerability screening to employee workplace wellness programs42. Given that the US differs with respect to the structure of health insurance and healthcare as compared to other countries, many issues in this space are of unique concern in the US. Differences such as the lack of a national health system, very high healthcare costs, the fragmentation of rules of healthcare regulation, and the distribution of insurers and employers across a large number of states, shape risks, benefits, and incentives for such programs.

Beyond the narrow category of workplace wellness programs that offer genetic testing, workplace wellness programs generally inspire critique. While many employers argue that workplace wellness programs can lead to healthier employees and lower costs for employers, this is not necessarily supported by currently-available data41,43. Studies and critiques of these programs have suggested that they do not address key employer concerns such as absenteeism44, healthcare coverage costs, or unhealthy employee behavior38,45, but rather serve to shift the cost of healthcare coverage from employers to employees46 by establishing rewards/penalties linked to health insurance premium levels. Additionally, there is worry that employees may forgo any concerns about the long-term risks associated with wellness programs (e.g., related to privacy and discrimination) in order to benefit from near-term financial incentives or to avoid penalties. Many of these overall concerns raised by workplace wellness programs could also apply to wellness programs that include wGT.

One issue unique to wGT relates to genetic privacy. The public are wary of potential misuse of their genetic information—public polling in 2018 revealed that 47% of respondents who had undergone DTC genetic testing (or whose family members had done so) expressed concerns about genetic privacy47. Genetic testing within an employment setting itself could potentially heighten these privacy concerns if there is not adequate protection for employees’ information and employment26.

## Legal landscape

In 2008, the US Congress passed GINA, a law prohibiting employers from using genetic information, broadly defined, for decisions regarding hiring, firing, promotion, or length of employment48. The law also prohibits covered health insurers from setting eligibility and premium or contribution amounts for health insurance based on genetic information. It does not, however, provide protections in the contexts of disability, long-term care, or life insurance27. Notably, GINA prohibits employers and health insurers from collecting genetic information; however, there are exceptions to this rule for certain cases, including monitoring one’s genetic information for changes due to exposure of toxic substances in the workplace and for voluntary workplace wellness programs49. Current GINA regulations generally state that a program is only voluntary if there is no incentive or penalty associated with providing genetic information to the employer50. Additionally, GINA only allows employers to access aggregate genetic information (rather than individual-level data) collected from employees in the wellness program. However, as is discussed further below, there have been recent efforts by regulators and Congress alike to alter this rule. While there are several other federal laws and policies that provide protections for employees in the context of voluntary workplace wellness programs, they are not specific to one’s private genetic information (see Table 1) (e.g., ADA, HIPAA, etc.)33,51.

Currently, it is unclear whether the complex web of federal and state laws that regulate medical information privacy, discrimination, and group health insurance coverage in employment—such as GINA, the ACA, the ADA, and HIPAA—actually ensure employee protections against inappropriate use or misuse of wGT by employers and insurance carriers25,52,53, such as accessing individual test results to inform employment decisions or increase life insurance premiums due to genetic predispositions.

Efforts have been made to put legal guardrails around the use of genetic information in employment and insurance markets to provide some protections for individuals40. However, many commentators feel these efforts have been inconsistent and inadequate27. The international landscape is unclear, as there is little relevant literature to date on wGT as described in this paper, and what literature exists is not recent54.

## Emerging policies

While experts recognize the potential benefits of wGT (e.g., testing for clinically-actionable mutations) for the employers’ overall preventive health strategy55, it is not yet clear if the benefits outweigh the risks for employees. In the absence of federal regulation providing guidance for employers or protections for employees there is some support for voluntary guidelines6,42 regarding implementation of wGT. For example, a 2010 statement by the American College of Occupational and Environmental Medicine (ACOEM) on Genetic Screening in the Workplace, argues that while genetic testing of the sort being offered through wGT has the potential to inform prevention and treatment approaches by way of pharmacogenomic, susceptibility, and diagnostic testing, it must be paired with guiding ethical and legal principles, scientific validity of wGT tests, and discussion of results with a trained health professional56.

Congress waded into the debate in 2017, with the introduction of HR 131357. This bill would have allowed employers to incentivize or penalize employees for their decisions to disclose genetic information in a wellness program. The allowable incentive or penalty would have been up to 30% of health coverage costs, thus mirroring current incentives allowed by the ACA for general wellness programs. Additionally, it arguably would have allowed employers to collect individual-level data about employees’ private genetic or medical information within the context of a voluntary wellness program58. This would have thus significantly diminished employees’ genetic privacy rights. Professional societies such as the American Society of Human Genetics (ASHG) and the ACMG opposed this bill that sought to exempt workplace wellness programs from GINA and the ADA59,60.

Finally, the EEOC under the Trump Administration proposed rules that would have altered the protections of GINA in regard to workplace wellness programs61. For example, the proposed rules would have allowed rewards to incentivize individuals to share their genetic information, thus increasing concerns about coercion and the risks of breaches of privacy and the possibility of discrimination for employees. Of note, employers would not be required to share the type of employee health information they would be privy to or how they would use the information.

However, as of July 2021, any further action on these proposed rules has been paused by the Biden Administration62.

## The need for further ELSI research on wGT

While two existing commentaries discuss wGT17,63 and address many of the concerns highlighted above55,64, they focus primarily on the vendors offering the testing and the employers contracting with them. One of these, Stakeholders Assessing Genetics with Employers (SAGE), is a 2019 federally-funded project that provides some framework and context for conducting research on wGT63 and created a checklist for employers considering wGT. The four areas for consideration are: (1) Defining wellness program goals; (2) Specific types of genetic tests to be offered to employees; (3) Legal and policy considerations to mitigate liability risks and choosing a reputable vendor; and (4) Types of evidence employers should request to ensure that their wGT goals are achieved. Ultimately, there are many questions to be answered and little published research exploring the intersection of workplace wellness programs and genetic testing17,41,65.

Given the expectation that wGT will become more prevalent in the future, there is an urgent need to understand its benefits and risks. There also remains a need for empirical data to address the concerns raised by wGT and potential policy safeguards. It will also be important to understand concrete issues such as whether there are differences in implementing wGT in different settings, including the academic, non-profit, and corporate settings, and within small versus large companies (e.g., in whether or not genetic counseling is offered or how aggregate data are accessed and used). Our group has undertaken an initial step to study the ELSI issues surrounding wGT in real world settings and to elicit the perspectives of a broader repertoire of stakeholders—including employees, employers, and other relevant groups—whose perspectives are necessary for a fully informed view of wGT’s risks and benefits. Our current NHGRI-funded mixed-methods study aims to address the gaps in understanding of the wGT landscape and provide much needed empirical data to inform a normative assessment of wGT.

Recognizing that existing studies on wellness programs report minimal short-term benefits and do not account for wGT, our study will provide a comprehensive assessment of wGT from both the employee and employer perspectives—advancing an evidence-based approach to policy and decision making in this area of genetic testing. By undertaking a multifaceted impartial analysis, we hope to provide foundational information and insights to inform decision making for wGT, including (if appropriate) considerations for its implementation, so as to maximize its positive impact on individuals, employers, and society alike, while minimizing harm.

## Conclusion

Genetic testing offered outside the clinical setting is affordable and accessible to a large proportion of the population. US employers are beginning to offer genetic testing to their employees as part of their voluntary workplace wellness benefits, though it is unclear how widespread this practice is or will become. While this practice is in its infancy, it is important to consider the implications of wGT for clinical care, including outreach to genetic counselors, clinical geneticists, clinical assessment, follow-up, and management. Today’s wGT through commercial third-party vendors is substantially different from the historical model focused on genetic monitoring and vulnerability screening. Given this shift, there are new ELSI and policy concerns that have arisen; however, there is little to no research currently being conducted to assess these concerns. At this time, it is still unclear whether Pandora’s Box of wGT will produce benefits or risks and for whom. Our hope is that our study and the work of others will begin to address this question while there is still time to shape the outcome. If wGT becomes more widespread, as we predict, it is critical to have conceptual and empirical analyses of the risks and benefits to inform policy recommendations designed to maximize positive impact on individual health, employers, and society alike, while minimizing harm.

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## Acknowledgements

This research was supported by NHGRI/ELSI (Grant No. R01 HG010679-01A1).

## Author information

Authors

### Contributions

C.L. and K.S. conceived the initial idea of the manuscript. B.C. and K.S. wrote the first draft of the manuscript with major revisions from A.E.R.P. and D.J.H.M. A.E.R.P. and D.J.H.M. contributed equally to this manuscript. G.F., K.A.R., K.S.B., W.R.U., J.S.R., and C.L. provided additional comments and feedback. Ultimately, all authors reviewed and provided feedback on the manuscript.

### Corresponding author

Correspondence to Debra J. H. Mathews.

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### Competing interests

The authors declare no competing interests.

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Sanghavi, K., Cohn, B., Prince, A.E.R. et al. Voluntary workplace genomic testing: wellness benefit or Pandora’s box?. npj Genom. Med. 7, 5 (2022). https://doi.org/10.1038/s41525-021-00276-8

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• DOI: https://doi.org/10.1038/s41525-021-00276-8