[Paleopsych] NYT: I.B.M. to Put Genetic Data of Workers Off Limits
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Wed Oct 12 00:07:35 UTC 2005
I.B.M. to Put Genetic Data of Workers Off Limits
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
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
"If you want a genomic revolution," Mr. Caplan added, "then you better
have policies, practices and safeguards that give people comfort and
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
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
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
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
"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."
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