Proposed Bill Would Ban Genetic Discrimination
Experts say they expect that a new bipartisan bill may cut down on some Americans’ reluctance to undergo genetic testing due to fears of facing discrimination from their health insurance providers.
If passed, the new bill will forbid health insurers from refusing coverage to clients who might be genetically predisposed to certain disorders or raising premiums for healthy people.
"Many people have been getting a genetic test using an assumed name because they were afraid that the information would otherwise haunt them," said Dr. Francis Collins, head of the National Human Genome Research Institute, part of the U.S. government’s National Institutes of Health.
"And they’ve sometimes asked their physicians to lie about whether the test was positive in order to protect them."
Genetic testing methods traditionally use samples of blood, saliva or tissue to gauge a person’s likelihood of being predisposed to certain inherited diseases such as breast, ovarian or colon cancer or Huntington’s disease.
Doctors may order genetic tests for various reasons, including looking for gene-based diseases in adults before symptoms appear or confirming a diagnosis in someone with symptoms.
Tests also may find whether a person has a genetic predisposition to a disease that could pass to children.
Known as the Genetic Information Nondiscrimination Act, the bill would disallow discrimination by employers, unions and employment agencies that would use personal or familial genetic information in hiring, firing, compensation or promotion decisions.
It would become the first movement to allow the Department of Labor and Health and Human Services to enforce directly against plans and issuers that violates the bill’s protections
"When this bill passes, we’ll have protections to be able to tell people you don’t need to worry about insurance or employment discrimination," Kathy Hudson, director of the Washington-based Genetics and Public Policy Center at Johns Hopkins University, said.
The bill has already gained support from the White House. It was passed by members of the Senate on Thursday, and now faces approval by the House of Representatives this week before reaching President George W. Bush’s desk.
“Discrimination based on genetics is just as wrong as discrimination based on race or gender,” Committee Chairman Edward Kennedy (D-Mass.), said.
“Our bill provides specific protections for citizens against genetic discrimination. It prohibits health insurers from picking and choosing their customers based on genetics. Employers cannot fire or refuse to hire persons because of their genetic characteristics. It enables Americans to benefit from better health care through the use of genetic information, without the fear that it will be misused against them.”
Last year, two companies — Iceland’s Decode Genetics Inc and 23andMe, a U.S. firm funded by Google Inc — launched rival services offering people a view of their genomes for just under $1,000. Another unlisted U.S. company, Navigenics, has begun testing since then.
Some medical experts claim the tests are a waste of money, adding that people are likely to find the same information by studying their family medical history, especially by looking at diseases that are heavily rooted in genetics.
Last week, the California Department of Public Health announced it was responding to consumer complaints against a handful of unnamed companies offering direct-to-consumer genetic testing.
The complaints involved cost and accuracy of tests and whether a licensed doctor ordered them as required.
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