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Can 'Positive' Be a Negative on Your Job and Insurance?

Posted on: Thursday, 20 October 2005, 21:00 CDT

By Marni Pyke Daily Herald Staff Writer

They seem worlds apart, but former Chicago Bulls center Eddy Curry and downstate grandmother Carolyn Dean have something in common.

Both fought to keep information about their genetic makeup private.

Curry opposed the Bulls' request to take a DNA scan to diagnose a possible heart condition. So the team traded him to the New York Knicks.

Dean is an ovarian cancer survivor who sparked an Illinois law banning discrimination on the basis of genetics.

The two stories underscore a growing controversy about genetic tests and privacy rights that Congress is trying to address with a law that faces stiff opposition.

With advances in science, experts can determine if a person is carrying a gene likely to cause illnesses like Parkinson's disease. The tests can help individuals take preventive steps to stay healthy.

But there are fears employers and health-insurance companies could misuse genetic information and not provide health coverage for someone showing a predisposition for, say, breast cancer.

The Senate in February passed a bill banning genetic discrimination. But the legislation is on uncertain ground in the House.

Its sponsor, U.S. Rep. Judy Biggert, a Hinsdale Republican, says the law would allow people to undergo testing and be proactive about their health care without fear of reprisal.

"People can really help themselves and have the personalized medicine, which is going to allow them to live a more healthy life, a longer life, and also cut the costs," she said.

But powerful lobbyists are aiming at the policy, saying it's restrictive and unnecessary. Such pressure succeeded in killing similar legislation before.

'I was afraid'

The 72-year-old Dean, who lives in Knoxville, near Galesburg in western Illinois, suffered ovarian cancer, as did her mother and grandmother.

Though she survived, Dean worried she might have a predisposition for the disease and pass it along to her daughters. When she learned in 1996 that a test was available to let her know if she was genetically destined to contract the disease, Dean was excited.

But her oncologist told her to slow down, explaining the results weren't confidential and would have to be shared with her health- insurance provider.

"That got my Irish up," Dean said. "I was afraid if I had the test and it came back positive, my family would be in danger of losing their insurance."

Similarly, Nebraska railway worker Gary Avary was in danger of losing his job in a landmark case that drew government scrutiny.

Avary's employer, Burlington Northern Santa Fe Railroad Co., ordered him in 2000 to undergo DNA testing after he contracted carpal tunnel syndrome. Refusing the exam would lead to dismissal, Avary was told. The Equal Employment Opportunity Commission sued the railroad, accusing it of conducting similar secret tests on other employees. The case was settled, but Avary's story got the attention of a wide audience, including Biggert.

In March, she introduced the House version of the Genetic Information Nondiscrimination Act. It would ban health insurers and employers from using DNA test information against an employee or client.

For example, if a worker is found to carry the gene responsible for a potentially dangerous heart condition, his or her insurance can't be canceled. The law also would forbid coercing a person to undergo genetic tests.

However, it wouldn't apply to someone like Curry because he is an independent contractor, and in his case, the test would be diagnostic not predictive of a future health condition.

Overall, the proposed law is stronger than the state version in terms of work-force protection, Biggert staffers said, and it's comprehensive. A state law, such as Illinois', may not apply to companies based elsewhere.

Losing our edge

The paranoia about retaliation if you're found to have faulty DNA is affecting medical research, Biggert says.

National Institute of Health officials report that there is low participation in clinical trials involving genetics because of fears the information could be abused.

"Our biggest concern is what hasn't happened," she noted.

Biggert sits on the House Science Committee and followed the progress of the Human Genome Project, which mapped the genes in DNA.

"We invested the $3.7 billion in this. It has great promise, and people are afraid to do it," she said.

And if the United States loses its research edge, businesses and scientists could leave for countries with strict discrimination laws in play, Biggert said.

Advocates also argue that genetic testing will lower health costs.

For example, an expensive cancer drug called Iressa is effective with only some patients. Genetic testing gives doctors clues into who will and won't benefit and avoids unnecessary prescriptions.

Biggert says the business community, which is resisting the law, doesn't yet understand its benefits, which are aimed more at seeking compliance and less at collecting big fines.

"We made sure the damages would be a low as possible," she said.

Still, the U.S. Chamber of Commerce argues business is getting a bad rap.

"We've not said, 'No bill under any circumstances,' " said Michael Eastman, director of labor policy.

He contends, though, that the law as proposed is "over-reacting" and unnecessary.

Other anti-discrimination laws, such as those of race or disabilities, were enacted after years of abuse - and that hasn't happened with genetic testing, Eastman said.

"The mere possession of information is not enough to trigger a law," he said. "Most employers will tell you they don't want to know."

Moreover, a national law, critics say, will further add to an inconsistent patchwork of state policies.

When there are discrepancies between federal and state law, "sometimes you get whipsawed," said Neil Trautwein, assistant vice president for the National Association of Manufacturers.

But Jeremy Gruber, legal director of the National Workrights Institute, says the law is needed to protect basic rights.

"If someone has a predisposition to anything, it's not the employer's business to know," he said. "It could create a huge category of individuals that are unemployable for reasons that are scientifically non-definitive."

Gruber cites breast cancer as an example. The American Cancer Society estimates one in eight women will be treated for the disease. A worst-case scenario would be employers testing female workers for their predisposition to breast cancer and firing or not hiring those susceptible to it, he said.

"We have a real opportunity to pass anti-discrimination policy before it comes entrenched in our social fabric," Gruber said.

In the Eddy Curry situation, forcing the young center to take genetic tests was opening a can of worms, argues his attorney, Alan Milstein.

"The issue was whether an employer could compel him to take the DNA test. The answer to that is absolutely not," he said.

The Bulls star's troubles began in March when he experienced an irregular heartbeat. The team wanted a DNA probe done to see if Curry's genetic fortune predicted hypertrophic cardiomyopathy, a heart condition that can be life-threatening.

"It was an issue of privacy between him and his doctor," Milstein said.

Bulls brass said they wanted to find out the facts about Curry's health and protect him.

"Our intention through that whole process was to show him that we did care about him and that we were concerned about his well- being," team General Manager John Paxson said when the issue came to a head.

For Carolyn Dean, getting at the truth was paramount.

"Personally, I wanted to know if I carried that gene," she said. "I was really anxious but I wasn't afraid. I really wanted to know for my girls."

She took her case to state Rep. Don Moffitt, a Galesburg Republican who became the chief sponsor of the Illinois Genetic Privacy Act, which became law in 1997.

Like the bill proposed by Biggert, it bans discrimination by health insurers and employers as a result of DNA information.

Moffitt explained, "Our objective was that it's your information - and no one else's."

Should level of privacy depend on your job?

Are there situations when an employer is right to demand genetic information?

Should a mining company, for instance, test its workers for a propensity for lung cancer?

"Everybody comes up with a different answer. It's a tough one," said Northwestern University's Kelly Ormond, director of the graduate program in genetic counseling. "In a perfect world, we'd have everyone working in safe situations."

A host of metaphysical questions underline the whys and wherefores of genetic testing of employees.

Few would disagree that if you work in a job such as an airplane pilot, it's essential any medical condition that could jeopardize safety is disclosed.

But in most situations, Ormond said, "This country has prioritized that personal medical information is personal."

Perhaps undercutting the fierce debate over DNA privacy is the fact that "no test is infallible," University of Chicago Hospitals cardiologist Elizabeth McNally said.

"Every medical test has false positives and negatives," said McNally, who directs the university's cardiovascular genetics lab. "If you carry the breast cancer (gene) mutations, it's not 100 percent certain you're going to get breast cancer."

- Marni Pyke

Source: Daily Herald; Arlington Heights, Ill.

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