Senate passes genetic discrimination bill
WASHINGTON (AP) - April 24, 2008 The 95-0 Senate vote sends the Genetic Information
Nondiscrimination Act back to the House, which could approve it
early next week. President Bush supports the legislation.
The bill, described by Sen. Edward Kennedy as "the first major
new civil rights bill of the new century," would bar health
insurance companies from using genetic information to set premiums
or determine enrollment eligibility. Similarly, employers could not
use genetic information in hiring, firing or promotion decisions.
"For the first time we act to prevent discrimination before it
has taken firm hold and that's why this legislation is unique and
groundbreaking," said Sen. Olympia Snowe, R-Maine, who sponsored
the Senate bill with Sens. Kennedy, D-Mass., and Mike Enzi, R-Wyo.
There are more than 1,100 genetic tests available today, she
said, but these are "absolutely useless" if fear of
discrimination discourages people from taking tests or
participating in clinical trials.
Genetic testing could lead to early, lifesaving therapy for a
wide range of diseases with hereditary links such as breast and
prostate cancer, diabetes, heart disease and Parkinson's disease.
"But right now the ability to realize those goals is somewhat
limited" because of patients' fears that the information will be
used against them, said Dr. David Herrington, a professor of
cardiology at Wake Forest University and spokesman on genetic
issues for the American Heart Association. The legislation "will
help them both be more willing to participate in research and avail
themselves of the benefits of genetic testing."
Congressional efforts to set federal standards to protect people
from genetic discrimination go back more than a decade, to a time
when there were only a small number of genetic tests. But now, with
the mapping of the human genome in 2003, people have access to far
more information about their hereditary disposition to such
crippling afflictions as cystic fibrosis, Huntington's disease or
Lou Gehrig's disease.
Bill sponsors said that has increased the likelihood that a
prospective health insurance company or employer will reject a
person because of concerns that person will suffer a costly disease
in the future.
The Senate passed genetic nondiscrimination bills on unanimous
votes in 2003 and 2005 but couldn't get the House to act. A year
ago the House approved a White House-backed bill on a 420-3 vote.
Senate action on that legislation has been slowed by Sen. Tom
Coburn, R-Okla., who joined some business groups in warning that
the bill could encourage a flood of lawsuits.
A compromise worked out earlier this week tightens language to
ensure there is a "firewall" between the part dealing with health
plans and the section regarding employment, so as to discourage
inappropriate claims.
It also makes clear that, while individuals are protected from
discrimination based on genetic predisposition, insurance companies
still have the right to base coverage and pricing on the actual
presence of a disease.
"We certainly improved the bill from a liability standpoint,"
said Coburn, an obstetrician. He said he was an adamant supporter
of the legislation "if it is not designed to feed the trial
lawyers."
Rep. Louise Slaughter, D-N.Y., chief House sponsor of the bill
with Rep. Judy Biggert, R-Ill., said the House would "get it out
to the White House as quickly as we can." Slaughter, who first
introduced a genetic discrimination bill 13 years ago, said
personalized medicine advanced by genetic research has "the
potential to save billions of dollars in health care costs."
Dr. Francis Collins, genetics chief at the National Institutes
of Health, said it's difficult to know how often genetic
discrimination has occurred because victims are reluctant to come
forward.
He cited one example of a Texas-based railroad that once
conducted genetic tests on workers complaining of carpal tunnel
syndrome in an effort to argue the injuries weren't job related if
patients had a genetic predisposition.
"All of us carry glitches in our DNA and we're learning more
and more about those every day," he said. "A system that allows
that information to be used to deny people health care or a job is
a system that has lost its way. This is a civil rights issue and
it's high time we took care of it."
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The bill is H.R. 493
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