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The rise of genetic testing has touched off a tense legal debate over when and if employers and insurance companies should be allowed access to employees’ genetic data. At issue is whether current privacy laws related to genetics are strong enough to prevent discrimination, and if there are enough regulations governing what companies can and cannot know. Employment lawyers note that concern about discrimination related to genetic information is at an all-time high due to the explosion in genetic testing: Some 1,100 tests are now available, which is double that of five years ago. A significant fear, they say, is that as more tests become available and cheaper, companies will be tempted to use them. “I know it’s a hot-button issue right now,” said attorney Timothy Van Dyck, who heads Edwards & Angell’s employment group from its Boston office. “There’s no question that it would be a cost-saving tool for employers with respect to disability, workers’ compensation and health care-related costs. But candidly, I think most of the clients I represent recognize it’s a path they just don’t want to go down.” However, he noted, clients “are interested in knowing whether other companies out there are using it.” Currently, there is no federal law that bans outright genetic testing or genetic discrimination in the workplace. Federal law limits genetic discrimination in health insurance through the Health Insurance Portability and Accountability Act and in employment through the Americans With Disabilities Act (ADA). But those laws, many lawyers argue, has loopholes that still allow genetic discrimination to exist. There’s a patchwork of state legislation, but attorneys say those laws vary state to state and lack consistency. Meanwhile, efforts to prevent genetic discrimination are coming to the fore. Congress is considering a bill that would prevent health insurers and employers from using genetic information to determine eligibility for health care, set premiums, or hire and fire people. The measure, known as the Genetic Information Nondiscrimination Act of 2005, unanimously cleared the U.S. Senate on Feb. 17. A similar bill is now before the House of Representatives. “It is of critical importance that people do not feel afraid to use available technologies that could save their lives just because they are worried about losing their health coverage or their jobs,” Senator Olympia Snowe, R-Maine, the Senate bill’s main sponsor, said in a statement. But lawyers say corporate America so far has acted responsibly with genetic testing. International Business Machines Corp. recent- ly adopted a policy promising employees that it would not conduct genetic testing. Aetna Inc. has pledged not to raise rates or drop coverage based on such testing. And many attorneys themselves are advising clients to stay away from it. “I think genetic testing is taking employers into a place they don’t need to be,” said Richard Block, chairman of New York firm Dreier’s Block Bernstein & Lagasse employment law group. “Who would not want to hire capable, really productive workers because they may get a disease one day? To be ultimately practical, what’s the point of it?” So far, guidance from the courts has been scant. A $2.2 million settlement was reached four years ago by railroad conglomerate Burlington Northern Santa Fe Corp., which was sued by federal regulators for submitting its employees to genetic testing. EEOC v. Burlington Northern Santa Fe R.R. Co., No. C01-4013 (N.D. Iowa). Laws banning genetic discrimination by employers are now in place in 33 states, but the scope and function of those laws vary widely. For example, 16 states have laws that ban employers from using genetic tests; 18 states ban employers from requesting genetic information; and 25 prohibit employers from requiring genetic tests. Genetic-testing supporters But not all companies are turned off by the concept of genetic testing, several employment attorneys note. “From the corporate clients that I have, this topic is certainly on their mind and most of them are waiting to see what other companies are going to do before they jump in,” said employment lawyer Rogge Dunn, partner at Dallas’ Clouse Dunn Hirsch. He views genetic testing as a potential cost-saving tool for employers. According to Dunn and several other lawyers, a growing number of companies are looking at genetic screening as a possible way to curb rising health care costs, reduce workers’ compensation claims and protect workers’ safety. Several attorneys say that employers should know if someone has a genetic heart disorder, as was the case with Chicago Bulls player Eddy Curry, who was traded to the New York Knicks earlier this month after refusing to take a DNA test to see if he was susceptible to a fatal heart problem. Curry had been sidelined with an irregular heartbeat, so the Bulls requested genetic testing. “If science progresses to the point where it is possible to determine that an individual is virtually certain to have a health condition that poses ‘a direct threat’-such as an uncontrollable seizure when driving a bus-then employers should be able to make employment decisions based on this information in order to protect employees, customers and the public,” said attorney Hans Bader, of the Washington-based Competitive Enterprise Institute. “And if someone’s genes makes it difficult or impossible for them to safely or effectively perform a particular job, as may occasionally be the case, the law should not require an employer to allow them to perform it,” Bader said. Bader criticized the pending proposed federal legislation, saying it lacks a “direct threat” exception to protect worker safety. He also believes the federal bill will only lead to more lawsuits in the workplace. “Any such law provides yet another excuse for underperforming employees to sue their employers,” said Bader. He added that federal legislation is unnecessary “given the lack of evidence of widespread abuses by employers.” But abuse is going on, say privacy advocates, who argue that while not many companies admit to using genetic testing, complaints of discrimination say otherwise. The Washington-based Genetic Alliance, a national advocacy group for individuals with genetic diseases, said it receives about two complaints a week about genetic discrimination. And the Massachusetts-based Council for Responsible Genetics reports that over the last decade, there have been about 500 cases of genetic discrimination, where individuals or family members have lost jobs or health care coverage due to genetic testing results. And more recently, a study published in the May-June issue of the Genetics in Medicine Journal shows that 40% of Americans fear genetic testing will cause them to lose health benefits. “We suspect [discrimination] is going on because we continue on occasion to hear from people, calling and sending us letters about discrimination,” said Sujatha Byravan, executive director of the Council for Responsible Genetics, a nonprofit, public-advocacy group in Cambridge, Mass., that seeks to distribute accurate information about biotechnology. But why so many complaints and so few suits? Attorneys cite two factors: Genetic discrimination is tough to prove, and the laws are too weak to uphold a claim. “There’s really no precedent, and I think that there’s a reason for that: Because trying to bring a claim under the ADA for genetic discrimination is like trying to fit a square peg into a round hole. It just doesn’t work,” said Van Dyck, who believes federal legislation is needed to provide consistency and uniformity. But privacy advocates say the proposed federal legislation, while addressing discrimination issues, misses a key question: Should employers and insurance companies have access to genetic data in the first place? “We have to be able to ensure that genetic information is kept private so that people don’t have access to it,” Byravan said. “Even though legislation is out there, the information is not protected. Anyone can access it and use it.” Still, some type of federal guideline is needed, argue many attorneys. Chris Kuczynski, assistant legal counsel in the ADA policy division for the Equal Employment Opportunity Commission, noted that without federal legislation, the EEOC might run into trouble handling any future genetic discrimination lawsuits. He said while the EEOC holds that genetic discrimination is covered under the ADA, no court has ever upheld that opinion. “There are some unknowns here. We don’t know whether courts will adopt that view,” Kuczynski said. According to Kuczynski, there are loopholes in the ADA that could allow for genetic discrimination. For example, he said, under the ADA, once a job offer is on the table, employers can condition the offer on whether employees take a medical test, which could include genetic tests. These are holes that federal legislation could plug, he said. “Here we see something that is potentially a problem and there are efforts being made to try to stop it before there’s an explosion in this kind of testing,” Kuczynski said. Eric Dreiband, former general counsel for the EEOC, believes that the direction genetic testing takes rests in the hands of the courts. If more genetic discrimination lawsuits are filed in the near future, he said, the courts will have to decide whether genetic discrimination does in fact run afoul of the ADA. If the courts say yes, then federal legislation might not be needed, he said. But if they uphold the use of genetic testing in the workplace, then Congress may pass legislation.

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