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Senate Backs Genetic Privacy Bill

October 15, 2003
 By SHERYL GAY STOLBERG  

WASHINGTON, Oct. 14 - The Senate voted unanimously on
Tuesday to pass the first federal bill aimed exclusively at
safeguarding genetic privacy, ending six years of
legislative gridlock.

The White House announced that it supported the measure,
which would bar companies from using genetic information to
deny health coverage or employment.

Scientists and advocates for patients have been working for
years to pass such a bill, which they say will encourage
millions of people to have genetic testing without fear of
discrimination. Dr. Francis S. Collins, a leader in mapping
the human genome, watched from the gallery as the senators
voted, 95 to 0.

"It's been a long and difficult road," said Dr. Collins,
head of the National Human Genome Research Institute at the
National Institutes of Health. "You could say this is a
bill for people with D.N.A."

The insurance industry opposes the legislation, and the
bill faces an uncertain future in the House, where
Representative Louise M. Slaughter, Democrat of New York,
has been working on a similar measure since 1995. Mrs.
Slaughter joined with the Senate supporters of the bill in
urging the House to pass the measure immediately.

The House Committee on Education and the Workforce, one of
three panels with jurisdiction over the bill, said it was
planning hearings, which are not very likely until next
year. Mrs. Slaughter called the action "just another
delaying tactic."

The bill, a product of a bipartisan compromise in the
Senate Committee on Health, Education, Labor and Pensions,
would set new standards for genetic privacy. It would
prevent health plans from deciding enrollment based on
genetic information and from using such information in
underwriting. Employers would be permitted to collect
genetic information just to determine workplace exposures
and could not use the information in hiring.

Negotiators said the measure had been mired in disputes
over details, including the precise definition of genetic
testing. The disagreements took years to work out, they
said, because the topics were so complex. Under the
measure, genetic tests would be those that could indicate a
predisposition toward illness in the future, and not those
that diagnosed current illness.

The bill draws support from a wide range of groups that
represent patients and doctors, including the American
Medical Association, which said the Senate vote was "a
measure of relief for those who want to take advantage of
genetic screening but have worried that the information
would be used against them."

The chairman of the health panel, Senator Judd Gregg,
Republican of New Hampshire, described the bill as "civil
rights legislation" for "a world where the secrets of human
life have been plotted out and sheep have been cloned."

A spokesman for the Health Insurance Association of
America, an insurers' trade group, said many of the same
protections were in place under the Health Insurance
Portability and Accountability Act of 1996. The spokesman,
Larry Akey, said the bill was "premature and unnecessary."
Mr. Akey said his group would work against the bill in the
House.

"We think it's a solution in search of a problem," he said.

With the genome mapping, researchers have developed tests
for vulnerabilities to genetic disorders like cancer and
diabetes. Dr. Collins said studies had shown that up to one
in three Americans eligible for the tests did not take them
because they feared they could jeopardize their health
coverage or jobs.

Senator Olympia J. Snowe, the Maine Republican who was the
chief sponsor of the bill, said one patient's problems
prompted her to begin work on the bill in 1996. Breast
cancer had struck nine women in the patient's family. But,
Ms. Snowe said, the patient's daughter was afraid to have
genetic screening for breast cancer.

"The American people," Ms. Snowe said, "cannot have access
to the quality of care and the advancement of medical and
scientific discoveries if they are subjected and held
hostage to the fears of discrimination by their employers
and by insurers."

http://www.nytimes.com/2003/10/15/national/15DISC.html?ex=1067239920&ei=1&en=b5a909b0a66aaff2