Senate: End Gene-Test Discrimination
Bill Approved That Stops Employers and Insurers From Misusing Genetic Test Results
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
"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,"
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
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
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."