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Six years ago, U.S. Rep. Louise Slaughter, a New York Democrat, began her fight for a federal law to protect genetic privacy and forbid genetic discrimination. For years, she ran into a brick wall. Now, her bill looks as though it may sail through Congress. What changed? Two events — one in the halls of power in Washington and one in the nation’s heartland — fed the momentum for greater protection over our DNA. Let’s take each separately. Slaughter’s bill, the Genetic Nondiscrimination in Health Insurance and Employment Act, would forbid job-related discrimination based on genetic information. It would bar health insurers from discriminating against individuals based on genetic test results. The proposed law would also prevent disclosures of genetic information to third parties, such as employers and insurers. House Energy and Commerce Committee chairman Thomas Bliley, a Virginia Republican, stalled the bill for five years. He has never offered a public explanation for his refusal to bring the bill to a committee vote. Bliley retired from Congress last year. The new chairman, Billy Tauzin, a Louisiana Republican, has indicated his willingness to hold hearings on the bill. The bill’s chances in the House look good. Slaughter has 250 co-sponsors — more than a majority. The bill’s fortunes look even better on the other side of Congress. Tom Daschle, the new Democratic majority leader, is a co-sponsor of the Senate version of the bill. He’d like to bring it to a floor vote before Congress breaks in August. Even President George W. Bush has announced his support for federal legislation. But it took more than a legislative shuffle to demonstrate the dangers of genetic discrimination. In 2000 47-year-old Dave Escher of McCook, Neb., and 34 other railroad maintenance workers were diagnosed with work-related carpal tunnel syndrome. A letter from their employer, the Fort Worth, Texas�based Burlington Northern Santa Fe Railroad, ordered each of them to visit a company-designated physician for an exam. If they didn’t go, they were to be subject to discipline. The doctor drew seven vials of blood from Dave Escher. Escher, a 26-year Burlington Northern veteran, asked what he was being testing for. The doctor replied that the test was for diabetes, blood sugar, and, she laughed, “everything else under the sun.” It turned out that Burlington Northern was performing genetic tests on Escher and the other workers — without their knowledge and consent. The company wasn’t running a full range of genetic tests, says Richard Russack, a railroad spokesman. Burlington Northern was only trying to determine, he says, whether the employees had a genetic predisposition to carpal tunnel syndrome. If their conditions had proved not to be work-related, the company wouldn’t have had to pay for their medical treatment. Dr. Francis Collins, director of the National Human Genome Research Institute, says that the blood tests were unnecessary. There rarely is a genetic predisposition to carpal tunnel syndrome, and when there is, it usually first appears in adolescence or young adulthood. “Clearly, this is a test that should never have been applied in this circumstance,” says Collins. Burlington Northern workers and their union tipped off the Equal Employment Opportunities Commission that the company was conducting genetic tests on dozens of employees. The commission filed suit in February in an Iowa federal court. On April 18 the EEOC reached a court-approved settlement with Burlington Northern. The company agreed that it would no longer perform genetic tests on its employees, would not make any use of employees’ genetic test results, and would not retaliate against anyone who opposed the genetic testing or who participated in the EEOC proceedings. These restrictions will remain in place until the EEOC completes its investigation of Burlington Northern. Once the investigation is finished, Escher and the other affected Burlington Northern workers plan to bring a civil suit against the company. Burlington Northern, however, isn’t the only company that performs genetic tests on its employees. In an American Management Association study of more than a thousand large and midsize companies conducted last year, one-third admitted to collecting genetic information about their workers. Seven percent said they used this information in hiring and promotion decisions. And this new form of discrimination could have broad effects. Because every person has between five and 30 defective genes, everyone is a potential victim of genetic discrimination. Fear of genetic discrimination is already having a harmful effect on medical research. For instance, the National Institutes of Health is conducting research to discover which people are most at risk for colon cancer. Approximately 33 percent of the test group has refused to participate out of fear that their genetic information might fall into the hands of their employers and health insurers. Genetic testing can play a useful role in determining which people are more susceptible to cancer. Many people, however, won’t get those genetic tests because of their concern over genetic discrimination, says Janine Lewis, a genetic counselor with Genetic Alliance, a nonprofit group for persons afflicted with genetically based diseases. Existing laws offer some protection — but the extent of the protection is unclear. For instance, the Americans with Disabilities Act prohibits employers from unreasonably discriminating against any employee who has a disability. But are employees who are genetically predisposed to certain conditions disabled? “I’m not sure,” says Peter Petesch, a partner at Washington, D.C.’s Ford & Harrison. “Under recent court interpretations,” Petesch continues, “there must be a present and existing substantial limitation in a major life activity. A mere predisposition to possibly suffer symptoms in the future might not fall within that definition. That’s where we may have a gap in the law.” There is also a legal gap on whether and when employers can do genetic testing. The ADA forbids medical tests or inquiries before a job offer has been made, but not afterward. What employees do with information obtained in a post-offer test is another matter. “You use that information at your peril because you can count on the EEOC going after you if you revoke the offer based on the results of a genetic test,” Petesch says. As for medical tests on current employees: “They may be done if there are legitimate safety and health concerns,” says Petesch. So can a test be done in order to ascertain whether a particular work environment or a specific job poses heightened health risks for an employee? For instance, if an employee works around carcinogenic chemicals, can the employer find out whether that employee has a genetic propensity for cancer? If an employee works with jackhammers, can the employer find out whether the employee has a genetic propensity towards carpal tunnel syndrome? And if so, can that employee be fired because of concerns about his own health and safety? The federal appeals courts are divided on the issue. The 5th and 11th circuits say that the ADA allows an employer to remove an employee from a job if he poses a threat to the health and safety of others or of himself. But the 9th U.S. Circuit Court of Appeals has held that the ADA applies only to the health and safety of others. Under the 9th Circuit standard, an employee couldn’t be tested or fired in order to protect his health. Two other federal laws may provide some protection against genetic discrimination. The Employee Retirement Income and Security Act prevents an employer from terminating a person’s employment based on that individual’s anticipated employee benefits claims. This, according to Petesch, should prevent employers from firing employees whose genes predispose them toward a particular disease or injury. “But it is unclear who can sue, who can be sued, and what constitutes a violation,” Petesch says. The Health Insurance Portability and Accountability Act prohibits health insurers from denying insurance or increasing premiums because of an individual’s risk factors — which should include an individual’s genetic predisposition to disease. But the statute has two huge loopholes, says Susannah Baruch of the National Partnership for Women and Families, a Washington, D.C.�based nonprofit organization. First, the law covers only people participating in group health insurance plans. Second, insurers remains free to discriminate against an entire group by, say, raising premiums for or dropping coverage of a plan whose members have high potential genetic risks. State laws also provide some protection against genetic discrimination. Currently, 27 states — including California, Texas, New York, Florida, Ohio, and Illinois — forbid employment discrimination based on the results of genetic tests. Thirty-nine states forbid insurers from discriminating on this basis. But such protections can vary greatly from state to state. And many states have yet to enact laws against genetic discrimination. Months after being tested, Escher is still concerned: “Is this test something that could come back someday and haunt one of our three girls? Would an insurer refuse to renew my term life insurance?” “The railroad hired me on my ability and my capacity to do a job. They didn’t hire me on my genetics. If I’m genetically correct enough for God, I don’t really care if I’m genetically correct enough for Burlington Northern.”

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