People learning through genetic testing that they might be susceptible to devastating diseases wouldn't also have to worry about losing their jobs or their health insurance under anti-discrimination legislation the Senate passed Thursday.
The 95-0 Senate vote sends the Genetic Information Nondiscrimination Act back to the House, which could approve it early next week. President Bush supports the legislation.
The bill, described by Sen. Edward Kennedy as "the first major new civil rights bill of the new century," 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.
"For the first time we act to prevent discrimination before it has taken firm hold and that's why this legislation is unique and groundbreaking," said Sen. Olympia Snowe, R-Maine, who sponsored the Senate bill with Sens. Kennedy, D-Mass., and Mike Enzi, R-Wyo.
There are more than 1,100 genetic tests available today, she said, but these are "absolutely useless" if fear of discrimination discourages people from taking tests or participating in clinical trials.
Genetic testing could lead to 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.
"But right now the ability to realize those goals is somewhat limited" because of patients' fears that the information will be used against them, said Dr. David Herrington, a professor of cardiology at Wake Forest University and spokesman on genetic issues for the American Heart Association. The legislation "will help them both be more willing to participate in research and avail themselves of the benefits of genetic testing."
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.
Bill sponsors said that has increased the likelihood that a prospective health insurance company or employer will reject a person because of concerns that person will suffer a costly disease in the future.
Establishing a firewall
The Senate passed genetic nondiscrimination bills on unanimous votes in 2003 and 2005 but couldn't get the House to act. A year ago the House approved a White House-backed bill on a 420-3 vote.
Senate action on that legislation has been slowed by Sen. Tom Coburn, R-Okla., who joined some business groups in warning that the bill could encourage a flood of lawsuits.
A compromise worked out earlier this week tightens language to ensure there is a "firewall" between the part dealing with health plans and the section regarding employment, so as to discourage inappropriate claims.
It also makes clear that, while individuals are protected from discrimination based on genetic predisposition, insurance companies still have the right to base coverage and pricing on the actual presence of a disease.
"We certainly improved the bill from a liability standpoint," said Coburn, an obstetrician. He said he was an adamant supporter of the legislation "if it is not designed to feed the trial lawyers."
Rep. Louise Slaughter, D-N.Y., chief House sponsor of the bill with Rep. Judy Biggert, R-Ill., said the House would "get it out to the White House as quickly as we can." Slaughter, who first introduced a genetic discrimination bill 13 years ago, said personalized medicine advanced by genetic research has "the potential to save billions of dollars in health care costs."
Dr. Francis Collins, genetics chief at the National Institutes of Health, said it's difficult to know how often genetic discrimination has occurred because victims are reluctant to come forward.
He cited one example of a Texas-based railroad that once conducted genetic tests on workers complaining of carpal tunnel syndrome in an effort to argue the injuries weren't job related if patients had a genetic predisposition.
"All of us carry glitches in our DNA and we're learning more and more about those every day," he said. "A system that allows that information to be used to deny people health care or a job is a system that has lost its way. This is a civil rights issue and it's high time we took care of it."