Lisa Salberg
04-24-2008, 03:57 PM
Law would prohibit insurers and employers from using medical test information in health coverage and job decisions.
By Ricardo Alonso-Zaldivar, Los Angeles Times Staff Writer
12:34 PM PDT, April 24, 2008
WASHINGTON -- The Senate unanimously passed landmark legislation today that would outlaw discrimination by health insurance companies and employers because a person's genes raise their risk of breast cancer, Alzheimer's disease or any ailment that has a hereditary component.
The vote on the Genetic Information Nondiscrimination Act - or GINA - was 95-0.
The bill would prohibit health insurers from asking for or using genetic information to make a decision about coverage or to set premiums.
The potentially vast promise of a new era of personalized medicine based on genetic information has long been haunted by a disturbing possibility: The same genetic tests needed to identify potential victims of diabetes, glaucoma and other diseases could also be used to discriminate against them in hiring, promotion, medical insurance and other practical necessities.
As a result, even patients whose family histories put them at risk have been leery of getting tested. But now Congress is moving to eliminate that fear and encourage patients to take advantage of what could be a revolutionary change in medical diagnosis and disease prevention and treatment.
"We are on the threshold of a new era, because for the first time, we act to prevent discrimination before it takes hold," said Sen. Olympia Snowe (R-Me.), one of the original advocates for the bill in the Senate. "We are taking a stand that as we look to the future, genetic discrimination will not be allowed to flourish, to take root."
"Since no one is born with perfect genes, each one of us is a potential victim of genetic discrimination," said Rep. Louise Slaughter (D-N.Y.) sponsor of the first legislation introduced in Congress, in 1995.
It has taken more than a decade for the bill to finally come to the verge of becoming law because the House and Senate had previously failed to coordinate their actions. Moreover, business and insurance groups worked behind the scenes against the legislation, arguing that genetic discrimination is not a major problem, and that many states already had laws against it.
While people with group health insurance are already protected to some degree under existing federal laws, those who are self-employed and buy coverage on the individual market previously had no guarantees that their genetic information would not be used against them.
Under the bill, insurers would also be forbidden to raise premiums for a group because one or more members had genes that would predispose them to an illness. That particular protection is seen as important for small businesses that offer health coverage, because a sudden spike in rates can lead small employer to cancel coverage altogether.
Employers, unions and employment agencies would be prohibited from requesting or using genetic information for hiring, promotions, assignments or firing. A compromise worked out earlier in the week made it clear that employers - particularly large companies that self-fund their healthcare costs - could not be sued twice under the law for the same violation, both as employers and as insurers.
But the bill's protections do not extend to other forms of insurance coverage, such as life insurance and long-term care coverage. And even after passage of the antidiscrimination legislation, advocates warn that the government must still address major shortcomings in the regulation of labs and the tests themselves, to ensure accurate results.
Until recently, genetic tests were used mainly for rare conditions. But there are currently more than 1,200 diseases for which genetic tests are available in medical laboratories, and that number is expected to grow as scientists devise new tests for common conditions such as diabetes.
"It's the first civil rights bill of the new century of life sciences," said Sen. Edward M. Kennedy (D-Mass.). "We made sure today that our laws reflect the [scientific] advances we are making. The promise of new science will be inadequate if our laws fail to contain the right protections that genetic information will not be abused or misused.
By Ricardo Alonso-Zaldivar, Los Angeles Times Staff Writer
12:34 PM PDT, April 24, 2008
WASHINGTON -- The Senate unanimously passed landmark legislation today that would outlaw discrimination by health insurance companies and employers because a person's genes raise their risk of breast cancer, Alzheimer's disease or any ailment that has a hereditary component.
The vote on the Genetic Information Nondiscrimination Act - or GINA - was 95-0.
The bill would prohibit health insurers from asking for or using genetic information to make a decision about coverage or to set premiums.
The potentially vast promise of a new era of personalized medicine based on genetic information has long been haunted by a disturbing possibility: The same genetic tests needed to identify potential victims of diabetes, glaucoma and other diseases could also be used to discriminate against them in hiring, promotion, medical insurance and other practical necessities.
As a result, even patients whose family histories put them at risk have been leery of getting tested. But now Congress is moving to eliminate that fear and encourage patients to take advantage of what could be a revolutionary change in medical diagnosis and disease prevention and treatment.
"We are on the threshold of a new era, because for the first time, we act to prevent discrimination before it takes hold," said Sen. Olympia Snowe (R-Me.), one of the original advocates for the bill in the Senate. "We are taking a stand that as we look to the future, genetic discrimination will not be allowed to flourish, to take root."
"Since no one is born with perfect genes, each one of us is a potential victim of genetic discrimination," said Rep. Louise Slaughter (D-N.Y.) sponsor of the first legislation introduced in Congress, in 1995.
It has taken more than a decade for the bill to finally come to the verge of becoming law because the House and Senate had previously failed to coordinate their actions. Moreover, business and insurance groups worked behind the scenes against the legislation, arguing that genetic discrimination is not a major problem, and that many states already had laws against it.
While people with group health insurance are already protected to some degree under existing federal laws, those who are self-employed and buy coverage on the individual market previously had no guarantees that their genetic information would not be used against them.
Under the bill, insurers would also be forbidden to raise premiums for a group because one or more members had genes that would predispose them to an illness. That particular protection is seen as important for small businesses that offer health coverage, because a sudden spike in rates can lead small employer to cancel coverage altogether.
Employers, unions and employment agencies would be prohibited from requesting or using genetic information for hiring, promotions, assignments or firing. A compromise worked out earlier in the week made it clear that employers - particularly large companies that self-fund their healthcare costs - could not be sued twice under the law for the same violation, both as employers and as insurers.
But the bill's protections do not extend to other forms of insurance coverage, such as life insurance and long-term care coverage. And even after passage of the antidiscrimination legislation, advocates warn that the government must still address major shortcomings in the regulation of labs and the tests themselves, to ensure accurate results.
Until recently, genetic tests were used mainly for rare conditions. But there are currently more than 1,200 diseases for which genetic tests are available in medical laboratories, and that number is expected to grow as scientists devise new tests for common conditions such as diabetes.
"It's the first civil rights bill of the new century of life sciences," said Sen. Edward M. Kennedy (D-Mass.). "We made sure today that our laws reflect the [scientific] advances we are making. The promise of new science will be inadequate if our laws fail to contain the right protections that genetic information will not be abused or misused.