Congress Passes Bill to Bar Bias Based on Genes

May 2, 2008

A bill that would prohibit discrimination by health insurers and employers based on the information that people carry in their genes won final approval in Congress on Thursday by an overwhelming vote.

The legislation, which President Bush has indicated he will sign, speaks both to the mounting hope that genetic research may greatly improve health care and the fear of a dystopia in which people’s own DNA could be turned against them.

On the House floor on Thursday, Democrats and Republicans alike cited anecdotes and polls illustrating that people feel they should not be penalized because they happened to be born at higher risk for a given disease.

“People know we all have bad genes, and we are all potential victims of genetic discrimination,” said Representative Louise M. Slaughter, Democrat of New York, who first proposed the legislation. The measure passed the House on Thursday by a 414-to-1 vote, and the Senate by 95-to-0 a week earlier.

If the bill is signed into law, more people are expected to take advantage of genetic testing and to participate in genetic research. Still, some experts said people should think twice before revealing their genetic information.

Doctors say a fear of discrimination on the part of patients has prevented thousands at risk of genetic disease from taking advantage of tests that might help them make better health care choices. Some patients worry that they may be denied jobs or face higher insurance premiums if a genetic red flag shows up in their medical records.

Many who do learn that they are at higher risk for a disease opt not to ask their insurance companies to cover the costs of the genetic test, to keep the information secret. Some try to persuade medical professionals not to enter the test results in their health records; others keep the information from even their own doctors.

The measure did not always have such overwhelming support. Similar legislation had floundered for over a decade in the face of opposition from employers and insurers and skepticism from lawmakers over its necessity: virtually no cases of genetic discrimination have ever been documented.

But with the mapping of the human genome and the rapid discovery of genetic variants that contribute to risk of common diseases like breast cancer, colon cancer, diabetes and heart disease, the number of people who might benefit from learning what risks lie in their genes is growing quickly.

Senator Tom Coburn, Republican of Oklahoma, who had blocked the bill for months, agreed to let it go forward after the addition of language to protect employers from lawsuits that stem solely from insurance company violations of the law.

The U.S. Chamber of Commerce still opposed it, arguing that the fines were excessive and that its limits on the collection of medical information would complicate even routine practices, like recording a request by an employee to take a leave to take care of a parent with cancer.

The legislation, known as the Genetic Information Nondiscrimination Act, prohibits health insurance companies from using genetic information to deny benefits or raise premiums for individual policies. (It is already illegal to exclude individuals from a group plan because of their genetic profile.) Employers who use genetic information to make decisions about hiring, firing or compensation could be fined as much as $300,000 for each violation.

“This clears away what in many people’s mind had been a real cloud on the horizon,” said Dr. Francis S. Collins, director of the National Human Genome Research Institute at the National Institutes of Health. “Families with a strong history of genetic disease will have one less worry about the circumstances they find themselves in, and hooray for that.”

While the intent of the law is to prohibit discrimination by insurance companies based on genetic tests, the bill does allow the companies urge patients take them. The goal would be not to deny coverage but to help find the best, and least expensive, therapy for a patient.

“This legislation will strengthen patients’ privacy protections while preserving their access to health insurance plans’ innovative prevention and coordination programs,” Karen Ignagni, chief executive of America’s Health Insurance Plans said in a statement.

The health insurance measure would not go into effect until a year after it becomes law, and the employment measure would take effect only after 18 months. Even then, there may be reason to be cautious. The bill may be hard to enforce, some experts say, and it does not address discrimination by long-term care insurers or life insurers.

“This gives us a weapon and a tool and a voice to try to push people to do what they should, but health care costs are soaring, and the urge to discriminate still exists,” said Nancy Wexler, president of the Hereditary Disease Foundation. “It’s very hard to prove why somebody is firing you.”

For health insurers, the bill may avert the need to compete in a complex game of calibrating policies to an ever-changing set of genetic risk probabilities. But as genetic tests provide ever more information at lower costs, the entire notion of insuring against unknown risk that has long defined the industry may be upended.

It may also give ammunition to those who argue for universal health care. “Ultimately unlocking all these genetic secrets will make the whole idea of private health insurance obsolete,” said Karen Pollitz, director of the Health Policy Institute at Georgetown University.

In the meantime, the use of genetic information that the bill is likely to encourage may raise still more questions about how it should be used.

Genetic Information Nondiscrimination Act Clears Senate

April 24, 2008

The Senate today passed the Genetic Information Nondiscrimination Act (GINA), approving by unanimous consent of 95-0 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.

More Information:  

Find H.R. 493 (GINA) on Thomas

U.S. Public Opinion on Uses of Genetic Information and Genetic Discrimination

Issue brief: The impact of genetic discrimination

Summary of a recent hearing on GINA by the House Energy and Commerce Committee's Subcommittee on Health