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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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