• E-mail
• Print
• Comment
• Font Size
• Digg
• del.icio.us
• Discuss article

IBM Pledges to Keep Genetic Data Off Limits

Posted on: Tuesday, 11 October 2005, 12:00 CDT

By Steve Lohr

As concerns grow that genetic information could become a modern tool of discrimination, IBM planned to announce on Monday a new work- force privacy policy.

IBM, the world's largest technology company by revenue, is promising not to use genetic information in hiring or in determining eligibility for health care or benefits plans. Genetics policy specialists and privacy rights groups say that the IBM pledge to its more than 300,000 employees worldwide appears to be the first such move by a major corporation.

The new policy, which comes as Congress is considering legislation on genetic privacy, is a response to the 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 who are deemed at genetic risk of certain diseases or conditions from getting jobs or health insurance. "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 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 U.S. Equal Employment Opportunity Commission reached with the Burlington Northern and Santa Fe Railway.

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 coalition of patient advocacy groups in Washington, receives a few inquiries a week, said Sharon Terry, its president and chief executive. 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 revealed 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 U.S. Senate passed a genetic information nondiscrimination bill, 98 to 0, and the U.S. House of Representatives is considering similar legislation. Two years ago, after the Senate passed a genetic privacy act, the House never voted on the legislation. But House sponsors are more optimistic this time. In addition, about 40 states have laws that address some aspect of genetic privacy and discrimination.

To some extent, the privacy provisions in existing statutes, like the Health Insurance Portability and Accountability Act, and disability and civil rights laws already address the issue.

They include prohibitions against using personal medical information to discriminate against people in hiring and in providing health insurance. But the current laws tend to deal with the diseases or disabilities that people already have.

Opinion polls have repeatedly showed that workers are wary of companies using genetic test information against them.

Genetic specialists regard IBM's move as a positive step and one that could help prod policy forward. But many also insist that a federal law would be the best protection.

In an article in The Journal of the American Medical Association, Dr. Francis Collins, director of the National Human Genome Research Institute, and Dr. Alan Guttmacher, the deputy director, wrote that "potential discrimination in health insurance or employment based on the results of genetic testing has been apparent for years and requires a national legislative solution."

Source: International Herald Tribune

More News in this Category