After seven years of negotiation and debate, the Senate is poised to pass a measure that would bar companies from using genetic tests to deny insurance coverage, raise insurance premiums or make hiring and other employment decisions.
Medical research advocates said the measure, if it became law, would speed the arrival of “personalized medicine,” in which patients’ genes are studied to learn what diseases they are most vulnerable to and which treatments best suit them.
They said the popularity of existing gene tests, which can gauge a person’s risk of developing some cancers, Alzheimer’s disease and other ailments, has been limited because of fears that insurance companies and employers would penalize people shown to be susceptible to costly illnesses.
In the Senate, leading members of both parties agreed on a compromise bill Tuesday night that bars insurance companies and employers from requesting genetic tests or using the results of gene tests in most circumstances.
The compromise was supported by Senate Majority Leader Bill Frist (R-Tenn.) and Senate Minority Leader Tom Daschle (D-S.D.), and it was approved in a unanimous voice vote Wednesday by the Senate Committee on Health, Education, Labor and Pensions.
Aides said they expected it to face no significant hurdles on the Senate floor.
Similar legislation has been filed in the House, although its prospects are uncertain. The Bush administration signaled Wednesday that the president would sign a bill, as Health and Human Services Secretary Tommy G. Thompson issued a letter “to express the administration’s strong support” for the Senate legislation.
President Bush called on Congress two years ago to enact a ban on genetic discrimination. As governor of Texas, he signed legislation in 1997 that prohibits genetic discrimination in employment and group health plans, according to a White House statement.
“This is a very big deal,” Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University, said of the Senate action. “We know that patients are concerned about the misuse of genetic information, and that risk has weighed heavily in their decisions about whether to have genetic tests that could improve their health.”
Dr. Francis Collins, director of the government’s National Human Genome Research Institute, called the Senate action “a fantastic development.”
“If this passes, a major barrier to the adoption of genetic tools for the prediction of future illnesses will be removed,” Collins said. “We already see this barrier taking a toll right now in research on genetics, because people fear discrimination .... This will tell people that it’s safe to know about your own genome.”
A group of health insurers, however, criticized the bill as “a solution in search of a problem.”
“Independent research confirms that health insurers do not currently use genetic information in determining coverage or in setting premiums, nor do they plan to do so in the future,” Dr. Donald Young, president of the Health Insurance Assn. of America, said in a written statement.
He said the restrictions could bar insurers from using information that they have relied on for years, which in turn could hurt consumers “by limiting the ability of insurers to appropriately and fairly set premiums.”
Sen. Edward M. Kennedy (D-Mass.) said genetic discrimination in employment was “a growing problem.” He cited the case of Burlington Northern Santa Fe Railway Co., which was accused of seeking genetic tests, without worker permission, from certain employees who filed health claims. The railroad settled a lawsuit with the Equal Employment Opportunity Commission over the issue.
Genetic tests that examine blood, body fluids or tissues have recently been developed to help doctors diagnose their patients’ illnesses. The tests look for the tiny alterations in a gene that are the hallmarks of some diseases.
Other tests can find genetic signs that a person is at high risk for developing a disease, such as breast cancer. Doctors may also use genetic tests soon to guide them on which drugs to prescribe to which patients, and at what dose.
Under the legislation, Senate aides said, insurers would be barred from requesting or requiring a genetic test from consumers, and they could not deny coverage or raise premiums on the basis of genetic information.
Employers, labor unions, training programs and others would be barred from using genetic data to affect terms of employment. They would be barred from requiring or requesting genetic tests, except in certain circumstances, such as where monitoring a person’s genes can give information about his or her potential reaction to toxic substances in the workplace.
Workers could sue employers that violated the rules, though existing law may require them to go down other avenues first.