Information and Resources

Senate: End Gene-Test Discrimination

April 24, 2008 -- The Senate has passed a bill protecting consumers' genetic information, likely breaking a more than decade-old logjam on the issue.

The bill bars health insurance companies from charging higher premiums or refusing to offer medical coverage on the basis of genetic tests. It also prevents employers from seeking out employees' genetic information or making hiring or firing decisions based on test results.

Proponents say the bill is a critical step as medical care turns toward gene-based tests and treatments. While the number of available genetic tests continues to grow, so have concerns that the information could be used by insurers, employers, and others to single out those who could be more likely to become sick.

"As we begin to decipher this information, Americans have legitimate fears about how this deeply private information will be used," says Sen. Edward Kennedy, D-Mass., who chairs the Senate Health, Education, Labor and Pensions Committee and was the bill's main sponsor.

"This is the first major new civil rights bill of the 21st century," Kennedy says.

Lawmakers say privacy concerns have been a drag on genetic testing and research. Sen. Olympia Snowe, R-Maine, says she has seen "a litany of examples" of patients who have resisted tests for breast cancer or ovarian cancer genes because of fears over how the information will be used.

"It really is going to be what medicine and health is all about," Snowe told reporters.

The bill prevents medical insurers or employers from requiring genetic tests as a condition of coverage or employment. Insurers can be fined up to $500,000 for violating consumers' genetic privacy.

The bill also bars research institutions that conduct clinical trials from disclosing genetic information to employers or insurers.

Long Road to Passage

The bill is likely to easily pass the House next week, and the White House signaled this week that President Bush would sign it. It would mark a success 13 years after a genetic discrimination bill was first introduced in Congress.

The Senate passed the bill unanimously in 2003 and again in 2005, just as it did Thursday. But it has languished in the House as business groups, including insurers, worried that the bill could expose them to liability. Pharmaceutical companies had also complained that strict controls on personal information tied to genetic tests could inhibit their ability to conduct research.

Those concerns were overcome in the last several weeks. Republicans succeeded in altering the bill to ensure that employers and insurers wouldn't both be automatically liable if one or the other were sued in a genetic discrimination case.

Insurance companies voiced support for the bill Thursday. "Individuals must not face discrimination on the basis of their genetic makeup. We applaud the Senate for passing this important legislation that prohibits discrimination and protects patients' genetic information from unauthorized use and disclosure," Karen Ignani, president of America's Health Insurance Plans, the industry's main trade group, said in a statement.

Angela Trepanier, president of the National Society of Genetic Counselors, backed the bill in a statement. "Fear should not be a barrier to life-saving information. Young or old, sick or healthy, we should be able to take advantage of genetic testing without fear of discrimination."