 The U.S. Senate has passed the Genetic Information Nondiscrimination Act (GINA), approving by unanimous consent an amended version of H.R. 493, which passed the House April 25, 2007 by a vote of 420-3. The House is expected to take up the measure again quickly before sending it to President Bush to sign the measure into law.
"After a very long wait, Americans can now be confident that their genetic information cannot be used by health insurers or employers in harmful or hurtful ways," says Kathy Hudson, director of the Genetics and Public Policy Center, established at Johns Hopkins University by The Pew Charitable Trusts. "Our challenge now is to make sure that doctors and patients are aware of these new protections so that fear of discrimination never again stands in the way of a decision to take a genetic test that could save a life."
The legislation, when signed, will fulfill the longstanding agreement among American citizens and politicians that protection from genetic discrimination should be clear and consistent, Hudson explains. Until now, individuals' genetic information has been protected only by a largely untested patchwork of state and federal regulations. Ninety-two percent of Americans are concerned that results of a genetic test could be used in ways that are harmful to the person.
Moreover, scientists can now in good conscience tell patients and research participants that their genetic information is protected against misuse by health insurers and employers. Linking gene variants to health outcomes often requires studies involving large numbers of people, but scientists report that potential subjects are deterred by the fear that their information could be used against them by employers or insurers. In a survey of more than 4000 people conducted earlier this year, for example, the Center found that when considering whether or not to participate in genetics research, 93 percent of respondents said it was important that it be “illegal for insurers or employers to get my information.”
In addition to impeding research that would help to bring about the much-heralded era of personalized medicine, the threat of discrimination affects individual patients who could benefit from genetic testing have sometimes foregone it out of concern over possible repercussions. When people opt not to be tested, they lose the opportunity to seek monitoring and preventive care to avoid conditions for which they are at higher risk. Passage of GINA means that Americans will no longer have to make the trade-off between genetic privacy and appropriate health care.
The Senate unanimously passed versions of GINA in 2003 and 2005, but in both years the bill stalled in committee in the House. Last year, however, the House passed the measure quickly and today, the Senate for a third time expressed its commitment to nondiscrimination.
Adapted from materials provided by Genetics and Public Policy Center.
Human chromosomes, which contain a person's genes. 


In a unanimous 95-0 vote Thursday, the United States Senate passed a bill that would forbid employers and health insurance companies from discriminating against someone based on information learned through genetic testing.

The Genetic Information Nondiscrimination Act, described by Massachusetts Senator Ted Kennedy as "the first major new civil rights bill of the new century," will now be sent back to the House of Representatives, where it could be approved as early as next week. President George W. Bush, who would have to sign the bill for it to become law, has voiced his support for the legislation.

The bill forbids employers from firing, refusing to hire, or otherwise discriminating against employees based on genetic information, such as a family history of a hereditary disease. It also makes it illegal for employers to request genetic information of an employee or the employee's family.

Health insurance companies are also addressed in the bill, which forbids them from requesting genetic information or using such information to set premium rates or determine enrollment eligibility. However, insurance companies would still have the right to base one's health coverage on the actual presence of a genetic disease.

"For the first time we act to prevent discrimination before it has taken firm hold and that's why this legislation is unique and groundbreaking," said Maine Senator Olympia Snowe, who sponsored the bill along with Sen. Kennedy and Sen. Mike Enzi. Snowe fears the threat of discrimination may discourage people from undergoing genetic testing, which can help to diagnose a wide range of diseases and lead to lifesaving therapy.

Kathy Hudson, director of the Genetics and Public Policy Center, reports that 92 percent are worried that information gained in genetic testing may be used against them. "After a very long wait," she says, "Americans can now be confident that their genetic information cannot be used by health insurers or employers in harmful or hurtful ways."

One part of the bill addresses this concern. "Federal legislation establishing a national and uniform basic standard is necessary to fully protect the public from discrimination and allay their concerns about the potential for discrimination," the bill reads, "thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies."

Oklahoma Senator Tom Coburn initially blocked Senate action on the bill, warning that it could potentially lead to excessive lawsuits against employers and insurers. But after changes were made to the bill to ease his concerns earlier this week, he supported the legislation and allowed the Senate to vote on it. "We certainly improved the bill from a liability standpoint," said Coburn, an obstetrician.

Similar bills were unanimously passed by the Senate in 2003 and 2005, but in both years the bill stalled in the House. The current bill was passed in the House of Representatives a year ago by a 420-3 vote. A genetic nondiscrimination bill was first introduced 13 years ago by New York Representatives Louise Slaughter, who says the House will "get it out to the White House as quickly as we can."