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Rewriting Life

Our Employers, Ourselves

IBM announces it won’t make decisions about its employees based on genetic testing.

IBM once set one of its Linux commercials on a basketball court. But other than that, the worlds of Big Blue and professional basketball have rarely crossed lanes. This month, though, they were linked by what promises to become one of the most volatile workplace issues of the next decade: genetic testing.

After it was revealed that Chicago Bulls star center Eddie Curry had a heart arrhythmia, the Bulls said he’d have to take a DNA test before the organization would tender a new contract. They were concerned about the effects of his condition on his health and the team.

Perhaps fearing that a DNA test would make him unemployable with any NBA team, Curry declined to submit to a test, and instead took his chances as a free agent. He got traded to the New York Knicks.

“This is far bigger than just the sports world,” Curry’s lawyer, Alan Milstein, commented when the Bulls first demanded the DNA test, according to a report on ESPN.com.

How right he was. On October 10, IBM Chairman Sam Palmisano signed a revision of the company’s equal opportunity policy specifying that IBM would not “use genetic information in its employment decisions.” In doing so, Big Blue became the first major corporation to proactively take this position. “Business activities such as hiring, promotion and compensation of employees will be conducted without regard to a person’s genetics,” wrote Palmisano in a letter to employees announcing the change.

With advances in genome research continuing at a rapid pace, the long-feared implications of genetic testing are finally coming to the fore. The Genetic Information Nondiscrimination Act of the Genetic Information Nondiscrimination Act. Act (H.R.1227), a bill that would make policies such as IBM’s federal law, is currently in committee in the House of Representatives, after sailing through the Senate 98-0.

Former House Speaker Newt Gingrich spoke before a House committee on the issue last week. Gingrich is pushing for all Americans to have electronic health records by 2006, but he also sees genetic privacy as a key component of that goal.

After passing the U.S. Senate so handily, it might seem the bill would be a lock in the House. But it’s a faulty assumption: versions of the legislation have been circulating on Capitol Hill for eight years with no passage.

As Congress debates the issue, other groups are ecstatic about IBM’s move, while also hoping that more companies formally adopt versions of genetic non-discrimination policies.

“We were thrilled with IBM’s announcement,” says Sharon Terry, president and CEO of the Genetic Alliance, an international group that assists people who’ve been discriminated against and that lobbies for genetic privacy in Washington. Terry says her organization has talked with “lots of companies” on the issue over the last eight years, and that many of them “haven’t formally pledged but have taken it on in principle.”

With its healthcare and life sciences division, IBM is helping to bring about the genetics advances – and access to personal genetic information – that are leading to both benefits and fears.

“There’s been a lot of discussion on the federal side and state side [regarding this issue] and IBM recognized the importance of addressing it early on,” says Michael Loughran, a spokesman for the company. “Personalized health care is evolving, and as it evolves, it will help people. We don’t want employees to be nervous about getting genetic screening that will help them, nervous about that impacting their employment.” 

Genetic testing isn’t yet widespread in medicine, and, consequently, issues such as preserving access to health insurance for people with genetic predispositions haven’t yet arrived on a wide scale in the workplace.

But there are a few outliers already. “Every couple of days I get a call from someone who has been discriminated against with genetic testing,” says Terry. “One woman said she asked her employer if she could get [a genetic test for susceptibility to breast cancer], but the employer told her not to, and that if she did, the company would have to let her go.”

Scenarios like that one could dampen the tremendous benefits that genetic testing is expected to provide. “In the future, we’ll be able to select the prescriptions for people based upon people’s genetic imprint. It will dramatically change the world of medicine,” says Alan Westin, a professor emeritus of public law and government at Columbia and an expert on information privacy. “But if you want to see that happen, you have to assure people that if they take a genetic test, it won’t be used against them in the employment context.”

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