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Genes And Job Discrimination

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by Laura Gilcrest
UPI Health Business Editor
Washington (UPI) Jan. 30, 2007
A new bill recently introduced in the U.S. House of Representatives would prohibit employers from making hiring/firing and promotional decisions based on genetic information showing a worker may contract a disease in the future, and would also prevent health plans from denying coverage or charging higher premiums using those same genetic tea leaves.

"There is a consensus in our country that when a person is applying for a job, they should not be denied a job due to a family history of diabetes," Rep. Robert Andrews, D-N.J., chairman of the House Education and Labor Subcommittee on Health, Employment, Labor and Pensions, said at a hearing on the bill Tuesday. "There is a consensus in our country that no person should be told they're going to get fired because they won't take a genetic test."

The proposed legislation, co-sponsored by Reps. Louise Slaughter, D-N.Y., and Judy Biggert, R-Ill., would be limited to cases where an employer intentionally seeks out genetic information about a worker and misuses that information. The bill even carves out a so-called "water-cooler" exception to protect employers from liability under the law if they come across the sensitive data inadvertently.

While the science of genotyping is still in its infancy -- researchers just completed the mapping of the human genome in 2003 -- supporters of the Genetic Information Non-Discrimination Act say the price of delaying a law ensuring patient privacy in genetic testing would be to stifle the advance of personalized medicine -- where treatments are tailored to an individual's unique genetic makeup -- because patients will be too worried about how their genetic information might be used if they submit to clinical testing.

"If people don't take part in clinical trials (testing genetic-based therapies), they can't reap the benefits of the technology," Slaughter told the subcommittee. "The bill has the support of the scientific community."

Yet people's reluctance to lend their genetic fingerprints to the birth of potentially life-saving treatments is very real.

A recent poll showed 66 percent of people surveyed had concerns about how their genetic information would be used, and 85 percent thought companies would misuse the data without a law prohibiting discrimination, Slaughter said.

Beyond genetic testing's scientific promise, Biggert stressed the technology's cost-saving potential, noting that a simple genetic test can now determine whether a cutting-edge but costly breast-cancer drug will work for a certain patient based on the patient's genetic profile.

Genetic tests could also help companies design employee wellness programs, which also help cut costs. "We could provide healthcare in a new way and save enormous amounts of money. There are no losers here," she told the panel.

However, "There is a clash between people who want to save money and those who say (a genetic-information non-discrimination law) will cause frivolous lawsuits," she added.

But Biggert said the proposed law is clear that an employer "must go out of his way" to discriminate against a worker to be liable and must "go looking" for the employee's genetic information.

The bill also requires that a worker first take his case to the Equal Employment Opportunity Commission before going to court, and damages caps are built into the law; for example, companies with fewer than 100 workers would pay no more than $50,000 in damages, while firms with more than 500 workers would have a damages limit of $300,000.

Other policy experts said the bill should still allow companies to collect such data if they can show the genetic information is relevant to a specific job or to worker safety, and that the bill should make clear that it is not a ticket for workers to sue their employers for failing to provide coverage for certain medical conditions.

Mohit Gose, spokesman for the trade group America's Health Insurance Plans, told United Press International that his group generally supports the new legislation's goal of prohibiting genetic information-based discrimination in coverage and premium policies, but said insurers should still be able to use the information for "improving the quality of healthcare being provided."

"We continue to work with the House and the Senate to ensure that (its passage) has no inadvertent consequences that could impede (health) quality improvement activities," he said.

But with genetic testing so new, others argue that the discrimination issue's time hasn't come, and that any legislation passed now amounts to a solution in search of a problem that may or may not happen as testing to predict disease becomes more widespread.

"Trying to stay ahead of the curve through legislation is a recipe for unintended consequences," Jack Calfee, resident scholar with the free market-oriented think tank American Enterprise Institute, told UPI. "These bans have a way of expanding through legislation and regulatory proceedings and become much broader than contemplated when they were written," he said. "Let's see if it's a problem for employers and employees before we legislate."

Committee Ranking Member Rep. John Kline, R-Minn., also noted the apparent lack of evidence as yet that genetic data are being misused by companies and insurers. "We don't necessarily need a broad, federal mandate," he said. "If legislation is needed -- and the jury is still out -- we should target the solution to the problem, rather than going after a mosquito with a machine gun."

But while there's dearth of discrimination cases stemming from the nascent testing so far, the subcommittee heard one real-world scenario from David Escher, a former employee of Burlington Northern Railroad. He testified that, after undergoing multiple medical tests, he was diagnosed with carpal tunnel syndrome, which was deemed to be work-related.

But Escher said his company required him to have further testing, and he later discovered the firm had had genetic tests done on several vials of his blood without his knowledge or consent, presumably to show his condition was genetic-based and unrelated to his job. "That's very powerful information (companies) can obtain from genetic testing," Escher told the subcommittee. "If it gets into the hands of the wrong people, it's a devastating experience."

Source: United Press International

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