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
safeguarding genetic privacy, ending six years of
The White House announced that it
supported the measure,
which would bar companies from using genetic
deny health coverage or employment.
Scientists and advocates for patients
have been working for
years to pass such a bill, which they say will
millions of people to have genetic testing without
discrimination. Dr. Francis S. Collins, a leader in
the human genome, watched from the gallery as the
voted, 95 to 0.
"It's been a long and difficult
road," said Dr. Collins,
head of the National Human Genome Research Institute
National Institutes of Health. "You could say this is
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
has been working on a similar measure since 1995.
Slaughter joined with the Senate supporters of the
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
planning hearings, which are not very likely until
year. Mrs. Slaughter called the action "just another
The bill, a product of a bipartisan
compromise in the
Senate Committee on Health, Education, Labor and
would set new standards for genetic privacy. It would
prevent health plans from deciding enrollment based
genetic information and from using such information
underwriting. Employers would be permitted to collect
genetic information just to determine workplace
and could not use the information in hiring.
Negotiators said the measure had been
mired in disputes
over details, including the precise definition of
testing. The disagreements took years to work out,
said, because the topics were so complex. Under the
measure, genetic tests would be those that could
predisposition toward illness in the future, and not
that diagnosed current illness.
The bill draws support from a wide
range of groups that
represent patients and doctors, including the
Medical Association, which said the Senate vote was
measure of relief for those who want to take
genetic screening but have worried that the
would be used against them."
The chairman of the health panel,
Senator Judd Gregg,
Republican of New Hampshire, described the bill as
rights legislation" for "a world where the secrets of
life have been plotted out and sheep have been
A spokesman for the Health Insurance
America, an insurers' trade group, said many of the
protections were in place under the Health Insurance
Portability and Accountability Act of 1996. The
Larry Akey, said the bill was "premature and
Mr. Akey said his group would work against the bill
"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
diabetes. Dr. Collins said studies had shown that up
in three Americans eligible for the tests did not
because they feared they could jeopardize their
coverage or jobs.
Senator Olympia J. Snowe, the Maine
Republican who was the
chief sponsor of the bill, said one patient's
prompted her to begin work on the bill in 1996.
cancer had struck nine women in the patient's family.
Ms. Snowe said, the patient's daughter was afraid to
genetic screening for breast cancer.
"The American people," Ms. Snowe
said, "cannot have access
to the quality of care and the advancement of medical
scientific discoveries if they are subjected and held
hostage to the fears of discrimination by their
and by insurers."