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About Genetic Testing

programWhat is genetic testing?
Genes are the parts of cells that hold the instructions for the body to function properly. Genetic testing looks for changes in genes (called mutations) that increase the risk of developing cancer. These mutations can be passed down through families, making some family members more likely to develop cancer.

What does genetic testing involve?
The test usually requires a small blood sample. Sometimes other specimens such as cells from a cheek swab can be used. The sample goes to a laboratory for analysis. Results come back to the Family Cancer Assessment Clinic (FCAC), where you will meet with a genetic counselor and a physician to discuss what they mean.

Is genetic testing recommended for everyone?
Not everyone is a candidate for genetic testing. A genetic counselor and physician will talk to you beforehand about whether genetic testing could be helpful for you. You always have the final decision about whether to proceed with testing.

Will my health insurance cover genetic testing?
Every health insurance policy is different. If you schedule an appointment a few weeks in advance, the FCAC can contact your insurance company to pre-authorize a specific genetic test. If your policy does not cover genetic testing, other options such as self-payment or testing other family members who are insured may be available. The FCAC also provides screening recommendations for you and your family based on family history alone.

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When genetic testing has confirmed a hereditary cancer predisposition, most insurance companies will pay for recommended screenings and treatments.

Will I have problems keeping or obtaining health insurance if I have genetic testing?
The Federal Health Insurance Privacy and Accountability Act (HIPAA) protects the privacy of your genetic information. In addition, Utah has a strong state law, the Genetic Privacy Act, which makes it illegal for health insurance companies or employers to use your genetic test results against you. This means employers cannot fire you, and a health insurance company cannot cancel your policy or raise your premiums because of a positive genetic test result. This protection extends to both group and private insurance policies. 
For information about the laws regarding genetic discrimination, visit www.ncsl.org.

The federal government passed the Genetic Information Non-Discrimination Act (GINA) in 2008. Its provisions will be phased in gradually between May 2009 and May 2010. GINA makes protection against genetic discrimination uniform across the United States. Under GINA, everyone will have basic protections against the misuse of genetic test results. State laws can provide additional protections if they choose. For more information about GINA, visit the website. www.genome.gov/10002328.

It is important to note that none of these laws protect a person’s ability to keep or obtain life insurance.