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Genetic Testing: Promise or Peril?

  • Laura Iiyama

Genetic testing holds the promise of measuring your future chances of contracting cancer or another life-threatening disease, based on analysis of the genetic material (DNA) you were born with. Tests already available can identify women with a higher risk of breast cancer, so they can seek earlier and more frequent examinations. Medical scientists say other tests under development could decide the most effective drug treatment for those with heart disease. However, many people regard genetic testing with great caution; they worry that adverse findings could result in loss of their jobs or health-insurance coverage. Congress is considering a possible ban on "genetic discrimination." Some lawmakers see this as an essential civil-rights issue, but others say legislative action is akin to going after a mosquito with a machine gun. Laura Iiyama has more.

For more than a decade, some U.S. lawmakers have been trying to prohibit employers and health insurers from requiring workers to undergo genetic testing on the grounds this could be discriminatory.

David Escher developed carpal tunnel syndrome, a painful condition often-requiring surgery, after working 26 years as a laborer, truck driver and machine operator.

Doctors agreed that his problem stemmed from his work. But his employer, Burlington Northern Railroad, secretly ordered genetic tests to see whether Escher was genetically predisposed to the condition.

Once Escher learned about the extra tests, he says he was plunged into depression by worries about his health and his job. "I became very despondent to the needs and concerns of my wife and daughters," he told a congressional hearing.

He also feared that results of the DNA test, which was not explained in advance, would affect his children's future as well as his own. "This was a very trying time in my life. One of the most heart-wrenching moments occurred when my little seven-year-old daughter Kristen began crying one night, because she was scared Daddy was going to lose his job and her little world would be turned upside down," he said.

Escher and 35 other workers sued the railroad, eventually winning a settlement of about $15,000 apiece. But advocacy groups have been pressing for protection against what they see as the misuse of confidential health information. They want genetic testing to be seen as a potential method of illegal discrimination.

Not surprisingly, many American businesses oppose this bill. They see the measure as opening the gate to a flood of complaints to the Equal Employment Opportunity Commission, the government agency created to deal with bias in the workplace.

"When cases are brought before the Equal Employment Opportunity Commission, over 60 percent of the time the agency deems that they don't have merit, says Michael Eastman, who represents the U.S. Chamber of Commerce. "Unfortunately what happens is that a disgruntled employee ... files a claim under every cause of action [he or she] can possibly think of -- race, sex, age, et cetera. And genetic information discrimination will just be one more thing added to that list the employer needs to defend ... against."

A public-opinion survey has shown that more than nine out of 10 Americans oppose sharing the results of any genetic testing with their employers.

There are over a thousand tests that can show whether someone has hereditary links to disease. If more people agreed to such testing, scientists say, the information could help them live longer and stay healthy.

Susanna Baruch is with Johns Hopkins University's Genetics and Public Policy Center, which conducted the survey three years ago. "There are diseases, like breast cancer and colon cancer, where having a particular genetic mutation means that you are at increased risk for having the disease," she notes. "Knowing that you are at risk may mean that you and your doctor are able to do things to reduce that risk and increase your chance of not developing the cancer."

President Bush says he wants to sign a genetic non-discrimination bill into law.

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