Genetic Profiling
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By Regina Nuzzo

Genetic Profiling

A new law that takes effect in 2009 promises to curb genetic discrimination

By Regina Nuzzo


After more than a decade of political debate, Americans are now assured that their genetic predispositions for diseases such as cancer will not cost them their health insurance or their jobs.

In May, President Bush signed into law a bill known as the Genetic Information Nondiscrimination Act, or GINA. It will take effect in 2009.

Supporters say the bill’s passage will allow more people to take advantage of advances in genetic medicine without fear of repercussion. They also note that the law addresses unfairness based on the thing we can least change about ourselves: our DNA.

“This is the first piece of civil rights legislation passed in the 21st century,” says Sharon Terry, the president and chief executive officer of Genetic Alliance, a Washington, D.C., nonprofit network of advocacy-oriented stakeholder organizations that supported the bill. “It is also the first piece of major genetics legislation.” Genetic discrimination legislation was first proposed in 1995, when genetic testing was in its infancy. Congress could not agree on a version until April of this year, when it finally passed GINA with near-unanimous support. Today, more than 1,000 genetic tests exist for diseases such as breast cancer, and hundreds more are in development.

The new law prevents health insurance companies from denying coverage or raising premiums based on genetic test results. It also stops employers from using genetic information in decisions about hiring, firing and promoting its employees.

Cancer holds a special place in the field of genetic counseling, says Caroline Lieber, the director of the human genetics program at Sarah Lawrence College in Bronxville, N.Y. Unlike test results for many genetic diseases, findings of cancer genetic tests can be used to reduce a person’s risk or to catch cancer early through increased screening and management. Yet worries about improper use of genetic information had previously caused some at-risk people to forgo counseling, she says.

With the new legislation, cancer survivors need not fear that genetic test results—which might help doctors predict the course of a current cancer or determine risk for developing other cancers—would be misused, Terry says. Their families can undergo genetic testing to learn their own risk without worry. And because the law also covers genetic information gleaned from relatives, people need not hide family history of disease.

Previous federal legislation—including the Health Insurance Portability and Accountability Act and the Americans With Disabilities Act, plus dozens of state laws—partly addressed genetic discrimination in group health insurance plans and employment. But the federal laws were limited in scope, and state laws’ scope of coverage varied tremendously, says Susannah Baruch, the law and policy director of the Genetics and Public Policy Center at Johns Hopkins University, in Washington, D.C.

The new legislation fills many gaps, though it too has limits. The law does not cover discrimination against people who already have a disease, for example. Nor does it cover discrimination in life, disability or long-term care insurance. It’s not clear whether these areas will be tackled in future legislation, Baruch says.

Many genetic-disease advocates are now turning their efforts to the caliber of the genetic tests themselves. “How do you make sure that genetic testing, particularly testing done over the internet without a doctor’s immediate involvement, is of high quality and useful to the person getting the test?” Baruch wonders. “For cancer survivors and for all of us, that will become increasingly important.”