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Your boss may be looking inside your genes

by Jeffrey P. Kahn, Ph.D., M.P.H.
Director, Center for Bioethics
University of Minnesota

A controversy is unfolding over the report that Burlington Northern Railway has been using genetic tests on workers who complain of carpal tunnel syndrome. It's not exactly clear why they would test, but the contention that they have been has landed them in court and raised the specter of how genetic testing might be used in the workplace and what, if anything, should be done about it.

The details of the case remain a bit fuzzy, but it seems that the railroad told workers who reported carpal tunnel syndrome -- a malady that results in sometimes debilitating pain in the hands and wrists, and which can come from repetitive and heavy work -- that they needed to give blood for some testing. The railroad, for its part, has stated that it requested the blood to determine whether the reported injury was work related or the result of some genetic predisposition, and to make working conditions safer. But workers complain that they're being tested without consent, to free the company of responsibility for work-related injury. What are the issues when employers want to perform genetic tests on workers?

Why test workers?

There are lots of reasons why employers might want to use genetic tests on workers -- some to protect the company, but others in the interest of both employers and workers. Testing workers in advance of their hiring or before they are exposed to a toxic environment in the workplace could provide health information for their own protection and help employers make workplace conditions safer. But such testing could also be used to reduce companies' liability for harm to workers, in at least two ways.

By testing workers in advance, employers can warn them of some pre-existing sensitivity or pre-disposition to a risk in the work environment. It would then be up to workers to decide whether to work in such an environment -- a shift in responsibility from the employer to the worker. By testing workers after they are injured, employers could argue that workers were genetically pre-disposed to the injury rather than the workplace or its conditions being responsible, again resulting in a shift of liability.

Why workers should worry about genetic testing

The problems with workplace genetic testing aren't isolated to who benefits from its use. The real concern involves what might happen to the information such testing creates. What sorts of decisions will be made based on the information and who will have access to it? Employers may try to make hiring and firing decisions based on the genetic risks of workers. In shades of an Orwellian novel, groups of potential workers with particular genetic profiles could be excluded from entire areas of employment and selected for others. In more concrete terms, workers' benefits could be limited based on a range of genetically pre-existing conditions.

Protecting genetic privacy

Because we have so little sense of how genetic testing might be used in the workplace, we must bend over backward to create protections. At the very least, basic ethical principles requiring worker consent to testing must be strictly enforced. We must go further -- governments must step up, starting with the federal government. Regulations to protect workers, such as the Americans with Disabilities Act (ADA) and occupational safety rules, must be clarified to determine whether they apply to workplace use of genetic testing and its results. The most obvious solution is for the government to make rules about how and when employers may use genetic information, if at all. The Clinton administration proposed model legislation on the subject and congressional legislation was even considered, but neither effort yielded results.

Whatever the answers, it is certain that as more tests are developed from the genetic revolution, more employers will be tempted to use them. Can they afford not to? Can we afford to let them? We can't wait much longer to work out the answers -- it might be railway workers today but it could easily be the rest of us tomorrow.

Visit the
"Ethics Matters" Archive
where you'll find other columns from Jeffrey Kahn
on a wide range of bioethics topics.

"Ethics Matters" is a biweekly feature from the
Center for Bioethics and CNN Interactive.


4:30pm ET, 4/16

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