The U.S. Congress on Thursday moved toward passing a landmark anti-genetic discrimination bill making it illegal for insurance companies or employers to raise rates or refuse jobs and insurance because of a chance that people’s genes might cause a debilitating disease like cancer or diabetes.
The House is expected to overwhelmingly pass the legislation a week after it passed the Senate on a 95-0 vote. The bill 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.
President George W. Bush is expected to sign the bill.
Rep. Louise Slaughter, a Democrat, said that for years doctors have been forced to tell women whose families have a history of breast cancer to refuse genetic testing for fear of discrimination.
“They have recommended to them that until a bill such as the one we are passing today becomes law in this country, they should not put at risk their health insurance,” Slaughter said.
The use of genetics to determine insurance and benefit eligibility is not unprecedented.
In the 1970s, several insurers denied coverage to blacks who carried the gene for sickle cell anemia. The Lawrence Berkeley National Laboratory in California secretly tested workers for sickle cell trait and other genetic disorders from the 1960s through 1993; workers were told it was routine cholesterol screening.
In another incident, Burlington Northern and Santa Fe Railway Co. paid 36 employees $2.2 million in 2002 to settle a lawsuit in which the workers claimed the company sought to genetically test them without their knowledge after they had submitted work-related injury claims. The railroad denied that it violated the law or engaged in discrimination.
Without genetic testing, researchers say it will be more difficult to find 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.
“We will never unlock the great promise of the Human Genome Project if Americans are too afraid to get genetic testing,” said Rep. Judy Biggert, a Republican, who sponsored the bill along with Slaughter.
Each person probably has six or more genetic mutations that place them at risk for some disease, according to the National Human Genome Research Institute. That does not means that a disease will develop, researchers said, just that the person is more likely to get it than someone without the genetic mutation.
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.
“Currently the fear of misuse of genetic information is preventing people from getting these important genetic tests done,” said Rep. Pete Sessions,a Republican. “The refusal to utilize effective genetic tests hurts individuals, researchers, and doctors alike. Lack of testing denies individuals important medical information that they could otherwise use to be proactively managing within their health with their doctor.”
According to National Human Genome Research Institute, 41 states already have enacted legislation related to genetic discrimination in health insurance and 31 states adopted laws regarding genetic discrimination in the workplace.
There has never been a federal law, although then-President Bill Clinton issued an executive order early in his administration to ban the federal government — the largest U.S. employer — from demanding that employees undergo any sort of genetic test or from considering a person’s genetic information in hiring or promotion decisions.
Bill text: http://thomas.loc.gov
Frequently asked questions about genetic testing: http://www.genome.gov/19516567
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