I.B.M., the world’s largest technology company by revenue, is promising not to use genetic information in hiring or in determining eligibility for its health care or benefits plans. Genetics policy specialists and privacy rights groups say that the I.B.M. 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 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. I.B.M. 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 I.B.M. 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,” Mr. 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,” Ms. 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. 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. Also, 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.
Some critics say the genetic privacy bill would deny insurers a means of measuring risk that would be available to the people they insure, allowing some people to take advantage of that information. For example, there is a strong genetic marker for the early onset of Alzheimer’s disease. A person could test for it privately, and then take out long-term care insurance.
Health insurers have expressed skepticism about the need for federal legislation to protect genetic privacy. They say that current federal and state laws are adequate, and that a new law could have the unintended effect of, say, preventing insurers from providing disease management programs to people who have tested positive for a genetic risk. But the industry’s big trade association, America’s Health Insurance Plans, has not lobbied against the Senate bill, according to Congressional staff members.
I.B.M. has become a big player in what is called information-based medicine, which relies on genetic information. The company’s involvement goes beyond the hardware and software often employed in such work. I.B.M. scientists and technology consultants are engaged in projects including research at the Mayo Clinic and a venture with the National Geographic Society to trace the genealogy of the world’s population.
“The time is right,” explained Harriet Pearson, I.B.M.’s chief privacy officer. “The market and medical practice is moving in this direction – to gather and use genetic information.”
In an e-mail message to be sent to all I.B.M. employees today, Samuel J. Palmisano, I.B.M.’s chief executive, writes that the spread of gene-testing and genomic research is “enormously promising – but it also raises very significant issues, especially in the areas of privacy and security.”
Opinion polls have repeatedly showed that workers are leery of companies using genetic test information against them. For example, a poll in 2000 by the National Center for Genome Resources, a research group, found that 63 percent of workers would not take genetic tests if employers could get access to the results.
Genetic specialists regard I.B.M.’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 last month in The Journal of the American Medical Association, Dr. Francis S. Collins, director of the National Human Genome Research Institute, and Dr. Alan E. 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.”