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Should employers be allowed to require genetic test results?

A bill in the House of Representatives would permit employers to impose penalties on employees who refuse to provide their genetic-test results. Does it violate privacy protections? Photo by iStock
Kristin Madison Professor of Law and Health Sciences and Associate Dean for Academic Affairs See More
The House Committee on Education and the Workforce recently passed a bill that permits employers to impose large financial penalties on employees who don’t agree to provide genetic test results to their companies’ workplace wellness programs. Critics, including the American Society of Human Genetics, claim that the bill, called the Preserving Employee Wellness Programs Act, undercuts the privacy provisions guaranteed by the Genetic Information Nondiscrimination Act, passed by Congress in 2008, and the Americans With Disabilities Act, passed in 1990 and amended in 2008. Proponents, according to an article in The Washington Post, argue that “competing regulations in federal laws make it too difficult for companies to offer these wellness programs.” Other House committees are reviewing the bill, and it must then be assessed by the Senate before it can become law.

The bill is not part of the House Republican effort to repeal and replace the Affordable Care Act, but it is expected to be attached to a subsequent ACA-related measure. We asked Northeastern’s Kristin Madison, professor with joint appointments in the School of Law and the Bouvé College of Health Sciences, to explain the bill and what repercussions may result if it becomes law.

What value do workplace wellness programs provide to employees as well as to companies, and how do these programs operate?

Workplace wellness programs often target goals such as smoking cessation, weight management, and exercise using a variety of approaches, including classes, competitions, and personal coaching. Many large firms offer health risk assessments, in which employees are asked questions about their health history and lifestyles; employees may also take biometric tests, such as tests for blood pressure or cholesterol levels. Just over half of very large firms with wellness programs offer some sort of financial incentive, such as gift cards or insurance premium adjustments, to participate in or complete their programs. Northeastern’s Healthy You is an example of a workplace wellness program.

Employees may look to wellness programs to provide support in improving their health. Employers may see workplace wellness programs as a way to improve health, boost morale and job satisfaction, increase productivity, or reduce healthcare costs.Evidence of the effects of wellness programs remains limited, however.

What are some of the key elements of the Genetic Information Nondiscrimination Act and the Americans With Disabilities Act that critics say H.R. 1313 will undermine?

When Congress passed laws targeting discrimination, it created exceptions for wellness programs that might otherwise run afoul of these laws. For example, the 1996 federal statute HIPAA limited discrimination based on health status in employer health plans, but included an exception for health-promotion efforts. Regulators implementing this exception imposed restrictions on health plan-based wellness programs, including a cap on the magnitude of financial incentives that could be tied to things like smoking status or cholesterol levels. With the passage of the Affordable Care Act, Congress endorsed HIPAA’s general approach. The ACA promoted the growth of wellness programs by raising the incentive ceiling, while at the same time retaining other regulatory restrictions.

The ADA and GINA stories in some ways resemble the HIPAA/ACA story: Congress wanted to prevent discrimination while preserving wellness programs. It enacted statutes that sought to combat discrimination by limiting the kinds of information that employers could collect, but carved out exceptions for voluntary wellness programs.

Many view H.R. 1313 as undermining important discrimination protections. ADA regulations limit incentives offered in conjunction with health risk assessments, while GINA regulations prohibit incentives for genetic tests. Under H.R. 1313, programs that include these elements are subject only to the more permissive incentive limits of the ACA. Under the ACA, employers can offer an incentive of up to 30 percent of the cost of family insurance coverage to encourage family participation in wellness programs; recent data suggests this could mean rewards or penalties of more than $5,000. Many employers do not offer incentives to families, and most employers offer incentives at significantly lower levels. Nevertheless, the possibility of high rewards or penalties tied to participation in these programs concerns many people.

What “competing regulations” do proponents say the bill will ameliorate, enhancing benefits for both employers and employees?

Last year, the Equal Employment Opportunity Commission, or EEOC, which enforces the ADA and GINA, released ADA and GINA regulations that imposed a new set of requirements on some programs already subject to the ACA’s limits. Some employers argued that these regulations increased regulatory complexity and imposed overly burdensome restrictions on wellness programs. H.R. 1313 responds to such concerns by curtailing the EEOC’s regulatory efforts. In a nutshell, it says that as long as wellness programs adhere to the limits set under the ACA, they comply with the ADA and GINA wellness provisions.

What might some of the repercussions—ethical, financial, and health-wise—be if the bill passes into law?

The bill would reduce regulatory scrutiny of wellness programs and allow for greater use of wellness incentives. It could expand employers’ access to the health-related data of employees and their families and increase the risks of discrimination and invasion of privacy. Employees hoping to avoid these risks by refusing to share health information might face significant financial penalties. And given limited evidence on wellness programs’ impact, it’s not clear that expanded data collection would lead to better health or lower costs.

Ultimately, though, the nature of the bill’s impact would hinge on employers’ evolving views of the value of wellness programs.  It’s not clear how many employers would push to expand data collection or increase incentives; data collection costs money, and many employers today offer no incentives or incentives well below the ceiling. Furthermore, employers that are sensitive to employee concerns may voluntarily adopt measures to address privacy and discrimination issues.

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