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Putting an End to Genetic Discrimination

Focused on Health - December 2008

By Rachel Winters

Finally, federal protection against genetic discrimination has arrived that will allow individuals seeking genetic testing to feel confident that their test results will be protected.

On May 21, 2008, President George W. Bush signed the Genetic Information Nondiscrimination Act of 2008. The act, which will be in full effect in November 2009, will be the first federal law that protects the public from genetic discrimination. This means that people will be protected from unfair treatment by health insurers and employers, based on information obtained through genetic testing that indicates an increased risk for developing cancer.

“Fear of genetic discrimination, particularly in the form of losing or being denied health insurance, is a major issue in genetic testing,” says Kaylene Ready, M.S., certified genetic counselor in M. D. Anderson’s Department of Breast Medical Oncology and Clinical Cancer Genetics.

“For some patients, it’s such a significant concern that they refuse to undergo testing, or in some cases, they refuse to even meet with a genetic counselor to discuss the option of genetic testing.”

Genetic tests can help determine cancer risk

This act has been signed none too soon, as more and more genetic tests are developed to find inherited genes that might lead to increased cancer risk. In the future, genetic tests will become a routine part of health care and will help medical providers determine individualized ways of detecting, treating and preventing disease.

Genetic tests look for alterations in a person's genes. Abnormal results on these tests could mean that the person has an inherited disorder. It is important to remember that these genetic differences don't always mean someone will develop a disease, just that the risk of getting the disease may be greater.

Legislation prohibits employers, insurance providers from using genetic information

Before the Genetic Information Nondiscrimination Act, anyone with positive genetic test results might have worried how they would be used. Now, it’s illegal for an employer to decide whether to hire or fire workers, or for an insurance company to refuse coverage, based on an inherited cancer gene. The new law is extremely significant to individuals and to researchers.

For individuals, it is particularly important because the law allows them to feel safe to consider genetic testing.

“We have all seen patients who decline genetic testing for fear of discrimination. This is troubling because they aren’t just declining genetic testing – they’re also declining the advantage of personalized cancer screening or risk-reduction options, based on the genetic test results,” Ready says. “For testing, what I worry about even more are the patients who never even come to see me or who pay out of pocket, versus filing with insurance, for fear of discrimination. I hope that this act will ease some of these fears and, at the very least, open the lines of communication.”

Genetic testing is key to cancer research

Along with the benefits that it provides to individuals, the Genetic Information Nondiscrimination Act should have positive effects on clinical research, too. Studies have shown that patients are less likely to participate in research studies due to the “fear factor” surrounding the collection of genetic information. Slow study enrollment delays the discovery of finding effective treatments and cures for diseases such as cancer. For example, persons at risk for hereditary colon cancer who were offered genetic testing as part of a research study cited fears of genetic discrimination as their primary concern about testing, according to The New England Journal of Medicine.

This same fear has a negative effect on health care providers because it can decrease patients’ consideration of recommended genetic tests.

“We use the results of genetic tests to make medical decisions and recommendations. My worst fear is that a patient will decline genetic testing and later go on to develop a cancer that could have been prevented,” Ready says.

The Genetic Information Nondiscrimination Act will allow researchers to reassure participants that there is a law to protect their rights.

This law, however, does not cover members of the military and does not apply to life insurance, disability insurance or long-term care insurance. The law also does not clearly state whether a person who already has cancer is protected.

The Genetic Information Nondiscrimination Act:

  • Prohibits group and individual health insurers from using a person’s genetic information to determine eligibility or premiums
  • Prohibits an insurer from requesting or requiring that a person undergo a genetic test
  • Prohibits employers from using a person’s genetic information in making employment decisions such as hiring, firing, job assignments or any other terms of employment
  • Prohibits employers from requesting, requiring or purchasing genetic information about people or their family members
  • Will be enforced by the Department of Health and Human Services, the Department of Labor and the Department of Treasury, along with the Equal Opportunity Employment Commission; remedies for violations include corrective action and monetary penalties

Seeking genetic counseling or testing is a big decision

People have different reasons for seeking genetic testing or for choosing not to be tested. For many, it is important to know whether a disease can be prevented if a gene alteration that causes that disease is found. For example, those who have inherited forms of breast or colon cancer have options that can alter their risks. These would include more frequent or earlier screening or risk-reduction surgery.

Individuals can seek advice from a genetic counselor to help them and their families think about the scientific, emotional and ethical factors that affect the testing decision. For more information about all of the important factors to consider, refer to the “Get the Facts” section of this newsletter.

"The Genetic Information Nondiscrimination Act is an important first step in protecting patients from genetic discrimination,” Ready says. “I hope to see this kind of legislation become even more comprehensive in the future because fear of discrimination shouldn’t have to be a factor in one’s decision to undergo genetic testing.”

To learn more or to find a genetic counselor, contact M. D. Anderson’s Clinical Cancer Genetics program at 713-745-7391, or contact the National Society of Genetic Counselors at 312-321-6834.

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