Johns Hopkins Health Alert
Genetic Testing for Colorectal Cancer: Privacy Concerns
If you've recently been diagnosed with colon or rectal cancer, you may worry that other family members may be at risk, too. One way to find out is to have a blood test to determine whether you inherited a genetic mutation that increased your risk of getting colorectal cancer -- a mutation that could affect your children, siblings, and parents as well.
Although these tests are now widely available, this doesn't mean you should rush out to have one done. That's because only about 5% of all people with colorectal cancer have an inherited genetic mutation. Most cancers are sporadic, the result of gene mutations that are not passed from one generation to the next. But if you have a strong family history of the disease, testing may be appropriate.
A genetic counselor will review your family history of colorectal cancer and will discuss the benefits and risks of testing. Genetic counselors typically only recommend testing when you have one of the following:
- at least three relatives who have had colorectal cancer, one of whom was a parent, brother, or sister
- colon cancer that has affected your family for two generations in a row
- a close family member who was diagnosed with colorectal cancer before age 50
- more than one close family member who has colorectal cancer or a related cancer
- a close family member who has tested positive for a genetic mutation
Your genetic counselor will discuss the pros and cons of having your insurance pay for the test versus paying for it out-of-pocket. (Testing can cost from $200 to $3,000.) If you already have been diagnosed, there is little reason not to have your insurance cover the test. If you have not, you need to decide if you want to have a positive test in your medical records.
The Health Insurance Portability and Accountability Act (HIPAA) prohibits insurers from using genetic information to limit eligibility for group or employer-based health insurance plans if a person does not currently have the disease. It also bars insurers from considering a genetic predisposition as a pre-existing condition. However, HIPAA does not provide the same protections to people with individual insurance plans.
In May 2009, that loophole was closed, thanks to the Genetic Information Nondiscrimination Act of 2008. Known as GINA, this law prohibits group and individual health insurers from denying coverage to a healthy individual or charging higher premiums based solely on a genetic predisposition to developing a disease in the future. The provisions of the law, however, do not apply to life insurance companies, members of the military, or those receiving care through the Veteran's Administration or the Indian Health Service.
Posted in Colon Cancer on June 30, 2010
Reviewed January 2011
Medical Disclaimer: This information is not intended to substitute for the advice of a physician. Click here for additional information: Johns Hopkins Health Alerts Disclaimer
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