December 28, 2024
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Bill aims to regulate gene data Senate votes to ban discriminatory use

WASHINGTON – Bonnie Lee Tucker of Hampden, Maine, was diagnosed with breast cancer in 1989 and again in 1990. Her mother was a breast cancer victim. So were nine other close relatives.

A genetic test could show whether Tucker’s daughter has a high risk of contracting breast cancer. But Tucker, now 53, doesn’t want the 25-year-old to be tested for fear she might face job and insurance discrimination.

The Senate overwhelmingly approved a bill Tuesday that is intended to eliminate such fear. The measure would prevent health insurers from denying coverage or raising premiums on the basis of genetic information and would make it illegal for employers to use such data when hiring or firing. Violators could be fined up to $300,000.

Maine Republican Sen. Olympia Snowe is the principal sponsor of the bill, the Genetic Nondiscrimination Act of 2003, which the Senate passed, 95-0. The House has yet to act on the legislation.

Snowe said her bill “provides the protection people need in order to seek out their individual genetic information in the hopes of treating and maybe even preventing the onset of disease.”

She said in a statement that “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. Americans shouldn’t have to make a choice between taking charge of their own care or keeping their insurance.”

Snowe said she introduced the bill after Tucker wrote to her in 1997.

“I am happy the bill proceeded with bipartisan support,” Tucker said. “Hopefully, employers don’t have the opportunity to go through your medical files anymore.”

Early detection through genetic testing is one key to surviving breast cancer, Tucker said. Her daughter, Laura, has not yet taken such a test, Tucker said, because she is afraid she might be the subject of discrimination.

“I hope that with this bill my daughter can be free of worries to be tested, so that she can go on with her life. … These companies are not going to save money on my daughter,” she added.

For some women, the risk of breast cancer rises if they have a hereditary defect in one of two genes, BRCA1 and BRCA2, whose presence can be detected through genetic testing.

Tucker wrote Snowe “about her fear of having the BRCA test because she worried it would ruin her daughter’s ability to obtain insurance in the future,” Snowe said. “And Bonnie Lee isn’t the only one who has this fear.”

But Dr. Donald Young, president of the Health Insurance Association of America, said the bill, if well-intended, was “unwise” because consumers already are 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.

In addition to barring use of genetic information in employment decisions, including hiring, firing, job assignments or promotions, the bill 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 may not collect genetic information before enrolling a person in a plan or use that information to deny coverage or set premium rates.

Rep. Louise Slaughter, D-N.Y., 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.

In the Senate bill, those claiming discrimination by an employer can take the case to the Equal Employment Opportunity Commission, as they would in a racial or sex discrimination case, and can 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, Collins said, genetic discrimination already was coming up “as an area that could cause this wonderful revolution fueled 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.”

House Education and the Workforce Committee Chairman John Boehner, R-Ohio, 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 Associated Press contributed to this report.


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