The cost of keeping your genetic information private
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With all of the attention focused on the new healthcare bill, it's understandable that a small bill (a mere eight-pages long) on wellness programs may have fallen under the radar. However, this bill could have large repercussions if passed given that about two-thirds of employers with 200 or more employees have wellness programs.

In essence, the Preserving Employee Wellness Programs Act would allow workplace wellness programs to collect information about family health history or genetic testing of employees and their family members. Specifically, the bill would allow employers to inquire or carry out genetic testing.

Current federal laws prohibit employers from gathering or requiring disclosure about family health history or genetic testing with two exceptions — where genetic information is specifically relevant to the workplace setting/employee responsibilities and as part of wellness programs. However, current laws prohibit employees from being penalized if they choose to decline to participate in such wellness programs.


Under the new bill, employees will still have the option to keep their family history and genetic test results private, but at a cost. By the numbers, employees could lose out as much as 30 percent on insurance premiums for declining to participate in their company's wellness program.


That's not exactly a voluntary choice for most people. In fact, that's downright coercive, a practice not permitted in biomedical research or medical practice. Research participants and patients have the right to make a decision regarding genetic testing without undue coercion or loss of benefits otherwise entitled to them.

Apparently, that longstanding ethical practice does not apply to the employment setting.

The fear of insurers and employers acting upon patients' and employees' genetic information, respectively, was a major concern when genetics exploded onto the scene in the 1990s with an international sequencing project, rapid technology development and growth of the biotechnology industry.

Several organizations representing genetic researchers, genetic healthcare providers and patients affected with genetic diseases lobbied for years to get anti-discrimination legislation passed, finally achieving success in 2007. When the genetic anti-discrimination bill was signed into law, testing was primarily limited to single genes.

Today, a single test can analyze all of a person's genetic material, totaling about 20,000 genes and countless other things we barely know about. However, although we can "read" the letters of DNA, we don't know what it all means. The growing popularity of wellness programs with employers is largely due to their purported cost-savings; according to a RAND Corporation study, for every dollar invested on wellness programs, $1.50 was returned. Genetics is not likely to increase cost-savings anytime soon for most people.

Furthermore, if this bill is passed, the pace of genetics research may slow as people's fears, heightened once again, decline to participate in much-needed studies to understand the impact of genes on our health. So, all of the great advancements in genetic technologies could remain unrealized by our limited understanding of what it all means.

Similarly, people may begin to decline to undergo medically important genetic tests out of fear they will have to disclose the information to the company's wellness plan.

Genetics and its resulting applications are very much a double-edged sword. Genetics has been both the victim and benefactor of the public's fascination with it. The hype and excitement has propelled the field forward substantially, but the journey has only just begun. Although many have recognized that genetics is far from the metaphorical crystal ball to predict future disease risks, genetics still captures the public’s interest as well as instills fear.

This bill presents a no-win situation for employees and, ironically, may backfire on employers.

Do I choose to work for a company that will penalize me if don't tell them what diseases my parents and siblings are afflicted with, and potentially require that I undergo testing? Or do I accept the offer from the company that respects my medical privacy?

When we understand more about our genes and health, perhaps there's a better strategy to support healthier employees. But we're not there yet, and this bill isn't likely to help us on that journey.

Susanne Haga is an associate professor in Medicine and an associate research professor in the Sanford School of Public Policy at Duke University.

The views of contributors are their own and not the views of The Hill.