Your boss may be looking inside your genes

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http://www.cnn.com/2001/HEALTH/02/19/ethics.matters/index.html

Your boss may be looking inside your genes

February 19, 2001

Web posted at: 12:48 p.m. EST (1748 GMT)

by 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?

What's your opinion?

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.