IBM to put genetic data of workers off limits

The new policy, which comes as Congress is considering legislation on genetic privacy, is a response to the growing trend in medical research to focus on a person’s genetic propensity for disease in hopes of tailoring treatments to specific medical needs. Gene tests are not yet widespread, but start-up companies are already intent on developing a market for genetic testing and counseling.

IBM has a business stake in promoting genetic data gathering and processing, as a leading information technology company with a growing presence in the medical industry.

Research on genetics is already beginning to lead to improvements in health care. But polls have shown that Americans worry that gene tests and genetic profiling could be used to keep people deemed at genetic risk of certain diseases or conditions from getting jobs and health insurance. And there have already been instances of employers trying to use genetic data to workers’ detriment.

“What IBM is doing is significant because you have a big, leadership company that is saying to its workers, ‘We aren’t going to use genetic testing against you,’” said Arthur L. Caplan, director of the Center for Bioethics at the University of Pennsylvania medical school. “If you want a genomic revolution,” Caplan added, “then you better have policies, practices and safeguards that give people comfort and trust.”

In a handful of publicly disclosed cases, genetic data has been used without workers’ knowledge. Perhaps the best known involved a $2.2 million settlement in 2002 that the United States Equal Employment Opportunity Commission reached with the Burlington Northern and Santa Fe Railway Company. The government had sued, saying the railroad tested, or sought to test, 36 of its employees, using blood samples, without their knowledge or consent.

According to testimony, the company performed the tests in the hopes of claiming that the workers’ arm injuries stemmed from a rare genetic condition instead of from work-related stress on muscles and nerves. The railroad denied that it violated the law, but agreed not to use genetic tests in future medical examinations.

The Genetic Alliance, a Washington coalition of patient advocacy groups, receives a few inquiries a week, said Sharon F. Terry, president and chief executive of the alliance. Some are complaints from people who have had trouble getting health insurance after they disclosed a genetic condition, while others come from people concerned about how employers might use any genetic information they might reveal in health forms.

“It is a problem already, and the prospect is that the problem will only grow,” Terry said. “That is why we need rules and practices from government and the private sector to prevent abuses.”

Congress has certainly taken notice of the issue. This year, the Senate passed a genetic information nondiscrimination bill, by a vote of 98 to 0, and the House is now considering similar legislation. — NYT