[Paleopsych] NYT: I.B.M. to Put Genetic Data of Workers Off Limits

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I.B.M. to Put Genetic Data of Workers Off Limits
http://www.nytimes.com/2005/10/10/business/10gene.html

    By STEVE LOHR

    As concerns grow that genetic information could become a modern tool
    of discrimination, I.B.M. plans to announce a new work force privacy
    policy today.

    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 trends in scientific research and medicine, along with the
    questions I.B.M. has heard from outsiders and some of its employees
    about its handling of genetic information, all contributed to the
    decision to adopt a formal genetic privacy policy.

    "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."