October 14, 2003
Insurance companies would be barred from using people's genetic information or family histories to deny medical coverage or set premiums under a bill passed 95-0 by the Senate on Tuesday.
Employers would also be prohibited from using such information in hiring and firing. The measure, supporters said, would protect people who might be reluctant to have genetic testing for such diseases as breast cancer or Huntington's disease because they fear that the information could be used against them.
"It simply isn't right that the very information which may lead to a healthier life and the prevention of a disease may also lead to the denial of health insurance, or higher rates," said Republican Senator Olympia Snowe, who has led a years-long effort to find a bipartisan consensus on the legislation.
"We can't afford to take one step forward in science, but two steps backward in civil rights," said Senate Democratic leader Tom Daschle, who worked with Snowe and others on the compromise proposal.
The legislation, which has yet to move in the House, builds on a 1996 law that shields patient records from discriminatory use.
Advances in genetics have made it possible to determine a person's predisposition to some cancers, glaucoma, cystic fibrosis and heart attacks, but also have raised ethical concerns about how that information is used.
Snowe cited a case in which 32 per cent of the women offered genetic testing for breast cancer by the National Institutes of Health declined because of fears of health insurance discrimination.
June Walker, president of the Jewish women's organization Hadassah, said her group has been pushing the issue since Hadassah medical facilities found a high frequency of Jewish women with genetic mutations predisposing them to some types of cancer, including breast and ovarian cancer. "But as science races ahead, individuals are hesitant to submit to genetic tests for fear of insurance and employment discrimination," she said.
But Dr. Donald Young, president of the Health Insurance Association of America, said the bill, while well-intentioned, is "unwise" because consumers are already adequately protected.
"Imposing restrictions beyond those already in place could hurt the very people they are intended to help by limiting the ability of insurers to appropriately and fairly set premiums," he said.
The legislation bars use of genetic information in employment decisions, including hiring, firing, job assignments or promotions. It also prohibits a company from collecting genetic data from an employee or family member except in special cases, such as monitoring the biological effects of toxic material in the workplace.
Insurers could not collect genetic information prior to enrolling a person in a plan or use that information to deny coverage or set premium rates.
Democratic Representative Louise Slaughter has introduced similar legislation in the House that gives people greater ability to sue employers or insurers over discrimination. Slaughter urged the House to take up the Senate bill.
Under the Senate bill, those claiming discrimination by an employer could take the case to the Equal Employment Opportunity Commission, as they would in a racial or sex discrimination case, and file civil claims.
Also urging the House to move quickly was Dr. Francis Collins, head of the National Human Genome Research Institute, the National Institutes of Health agency leading the project that completed a map of the human genetic code.
A decade ago when he joined the NIH, genetic discrimination was already coming up "as an area that could cause this wonderful revolution fuelled by the genome project to actually be stillborn because people would be afraid of getting the information that otherwise (would) be of great advantage to them for medical purposes," he said.
Republican John Boehner, chair of the House education and the workforce committee, said Tuesday he would hold hearings "to carefully consider this extremely complex area of law and science to ensure that worker privacy is sufficiently protected."
The administration has indicated its support for the bill.
The bill is S. 1053.
Copyright © 2003, Associated Press