Saying new protections were needed against the dark side of the genetic revolution, the Senate on Tuesday overwhelmingly approved legislation to prohibit companies from using genetic tests to make employment decisions, deny health coverage or raise insurance premiums.
The vote was 95 to 0. The measure now goes to the House, where sponsors of a similar proposal claim support from 221 of the 435 members. The Bush administration issued a statement Tuesday backing the Senate measure.
Doctors, scientists and patient groups long have said that anti-discrimination laws were needed to protect people from misuse of information gathered through some of the most important breakthroughs in genetic research.
By studying the DNA in a patient’s cells, for example, doctors are able to diagnose certain diseases and determine a person’s vulnerability to other illnesses, among them Alzheimer’s disease, Huntington’s disease and some forms of breast and ovarian cancer.
But people have been hesitant to have such tests done, doctors and patient groups say, even when the information can help them take steps to prevent illness. Patients fear that if genetic tests show even a predisposition to a disease that may be costly to treat, employers and health insurers will penalize them.
The Senate first began considering bills banning genetic discrimination in 1997, but none had passed.
“It’s a big day here,” said Dr. Francis Collins, director of the genome institute at the National Institutes of Health. “For those of us who have been working on this for more than 10 years, this is huge.”
Collins said that fears of discrimination already had deterred potential participants of genetic research projects. In two studies of breast cancer and one of colon cancer, one-third of the individuals who were qualified to participate ultimately declined after hearing that there was no federal law against such discrimination, he said.
Lawmakers made similar points Tuesday.
“It’s great medical news that we’ve moved this far ... but one of the other sides of the coin is that this information could be used arbitrarily, unsuspectingly or even intentionally to harm your employment or ability to get health insurance,” said Sen. Judd Gregg (R-N.H.), chairman of the Health, Education, Labor and Pensions Committee.
“If Congress fails to act, we may well squander the vast potential of this research to improve the nation’s health,” Sen. Edward M. Kennedy of Massachusetts, the senior Democrat on the health committee, said in a written statement.
“Discrimination based on genetic information is just as arbitrary, just as unacceptable and just as un-American as discrimination based on gender, race, religion or disability,” said Sen. Tom Daschle (D-S.D.), the Senate minority leader.
Several lawmakers cited the case of Burlington Northern Santa Fe Railway Co., which was accused of conducting genetic tests, without workers’ permission, on some employees who filed claims for work-related injuries from carpal tunnel syndrome.
The railroad was looking for signs that the injuries were genetic, according to the Equal Employment Opportunity Commission, which settled a lawsuit with the company over the issue.
But Collins said that although discrimination by employers was “not a purely hypothetical thing,” the legislation was needed mostly because of the potential for future misuse of genetic testing.
Two insurance industry trade groups said the legislation could limit legitimate uses of genetic information that might be helpful to patients.
Calling the bill “well-intentioned” but “unwise,” the Health Insurance Assn. of America said that current law already protected consumers from discrimination based on genetic testing. Insurance companies believe that the new legislation “will only add unnecessary and costly regulatory burdens,” said Dr. Donald Young, the association president.
At the American Assn. of Health Plans, spokesman Mohit Ghose said the legislation might prevent insurers from finding ways to encourage patients to enter early-intervention and disease-management programs.
The legislation would:
* Bar health insurers from denying coverage or raising premiums based on the result of a genetic test. Insurers could not request or require genetic tests before enrollment or at other times.
* Prohibit employers, employment agencies, training programs and others from using genetic tests in hiring, promotion, salary or other decisions related to employment.
* Set rules to guide employers in using genetic testing to monitor the health effects of working with toxic chemicals or other workplace hazards.
As in race and sex discrimination cases, workers could file complaints against employers in federal court after asking the Equal Employment Opportunity Commission to handle the issue.
The method for pursuing complaints about insurance violations would vary depending on the type of health plan. Employer-sponsored plans could be sued, although they would not be subject to punitive damages. Complaints about other types of health plans are governed by an array of state laws and federal regulations.
Rep. Louise McIntosh Slaughter (D-N.Y.) said violators would face tougher penalties under a bill she filed in the House, which has 221 co-sponsors, including 44 Republicans.
But Slaughter said she would urge House members to approve the Senate bill rather than her own to ease its passage into law.