The
House today passed a measure by a whopping 414-to-1 margin that would
prohibit health insurers from canceling or denying coverage or hiking
premiums based on a genetic predisposition to a specific disease. The
legislation, the Genetic Information Nondiscrimination Act (GINA), also
bars employers from using genetic information to hire, fire, promote or
make any other employment-related decisions.
Rep. Ron Paul (R-Tex.) was the lone dissenter.
The measure, which unanimously passed
the Senate last week, now goes to President Bush, who is expected
to sign it into law.
"Since no one is born with perfect genes, we are all potential victims
of genetic discrimination. This legislation marks the beginning of a
new era in health care where a person's genetic information can no
longer be used against them,'' bill sponsor Rep. Louise Slaughter
(D-N.Y.) said after the legislation sailed through the House. "By
prohibiting the improper use of genetic information, Americans will be
encouraged to take advantage of the tremendous life-altering potential
of genetic research.''
Slaughter, a microbiologist with a Master's degree in Public Health,
introduced the first genetic antidiscrimination legislation 13 years
ago.
Physicians now have access to more than 1,000 genetic tests that
diagnose or assess the risk of developing potentially life-threatening
diseases, including breast cancer, diabetes, heart disease and
Parkinson's.
Consumer advocates hailed the passage of the package, which they say
will close gaps in state laws and encourage Americans to take advantage
of potentially lifesaving genetic testing that they may now shun out of
fear of being sacked or denied health benefits.
"With the long-awaited federal passage of GINA, researchers and
clinicians can now actively encourage Americans to participate in
clinical trials without the fear of genetic discrimination,'' said
Joann Boughman, executive vice president of the American Society of
Human Genetics (ASHG). "Furthermore, under the federal protection
provided by GINA, health care practitioners will be able to recommend
appropriate genetic testing and screening procedures unencumbered by
the fear of discrimination based upon the results."
In the 1970s, many blacks were denied jobs and insurance coverage
because they carried a gene for sickle-cell anemia, including those who
lacked the two copies of a mutation necessary to get sick.
In 1998, it was revealed that Lawrence Livermore National Laboratory in
Berkeley, Calif., had secretly tested employees from the 1960s to 1993
for sickle-cell anemia, syphilis and pregnancy without their knowledge
or consent (they were told that they were undergoing routine
cholesterol screening). In 2002, the Burlington Northern Santa Fe
Railway company paid three dozen employees $2.2 million to settle a
lawsuit they had filed charging that the company had genetically tested
them without their knowledge after they submitted work-related injury
claims.
"This bill will allow every citizen and their physicians to benefit and
participate in the progress the gene therapies provide for all of us in
early treatment and the prevention of countless afflictions while
maintaining their essential insurance coverage," Rep. Steve Kagen,
D-Wis., a physician, said in support of H.R. 493 during the debate.
"Perhaps in the near future, I'll be able to rise here on the House
floor and ask that we support legislation to bring an end to all forms
of discrimination in health care,'' he added. "After all, our
constitutional rights protect us against discrimination and should be
applied to the area of health care throughout the industry – not just
genetic information, not just skin color, not just body chemistry or
the content and structure of one's bones – but to everything in the
human condition and every pre-existing condition. Let's begin to put
discrimination where it belongs – in the past."
News - May 1, 2008
Congress Passes Bill Barring Genetic Discrimination
Action culminates more than a dozen years of legislative haggling
By Lisa Stein