Genetic Testing FAQ
Below we answer some of the most common questions regarding cancer genetic testing. Browse through the questions or click on one here to go to a specific question.
What is a genetic test?
This test will look for genetic mutations in the anti-cancer genes you inherited from your parents. These genes protect you from cancer, but if there is a mutation, your risk of cancer is increased.
How is genetic testing done?
If you decide to get genetic testing, you may have blood drawn or may have your saliva tested. After giving your specimen, you should receive results in four weeks.
The following labs process cancer genetic testing.
What does it mean if I test positive for a genetic mutation?
If your mother or father had an anti-cancer gene mutation, there is a 50 percent chance you inherited it. This type of inheritance is called “autosomal dominant”. If you have an anti-cancer gene mutation, there is a 50 percent chance you passed it on to each of your children.
When one person in a family has genetic testing, and the gene mutation is identified, it can helps other relatives know more about their risk of cancer. If your relatives know they have the gene mutation too, then they can have cancer screening at a younger age and more often.
What are some of the genetic mutations and what are they associated with?
There is still much to be learned when it comes to genetic mutations we know are linked to specific kinds of cancer. This information is changing rapidly, but you can view a helpful chart here.
What will genetic testing tell me?
A positive test result means you inherited a gene mutation from one of your parents. Rarely, you are the first person in your family to have the gene mutation, but it is possible with some genes. A positive result does not mean you have cancer. A positive result does not mean you are going to get cancer. It means you have a higher risk of cancer, so you should take steps to be healthier, reduce your risk of cancer, and have screening tests earlier and/or more frequently.
A negative test result means the laboratory did not find harmful changes in the cancer genes you inherited from your parents. You should still have cancer screening tests regularly, but you do not have an increased risk of cancer because of your genetic make up. It is important to mention that cancer genetic testing is evolving and changing all the time. In the future, there will be better genetic tests and research, so you may be eligible for updated cancer genetic testing in the future.
A Variant of Uncertain Significance (VUS) means you have a variation in your DNA that is probably harmless, but it is difficult to know for sure. Everyone has common, natural variations in their DNA that do not affect health. More research and data collection is needed to know how to classify these variations.
If I get genetic testing and am found to have a mutation, can I be denied health insurance?
The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects people from genetic discrimination in health insurance and employment. This means it is against the law for health insurers to request, require or use genetic information to make decisions about your eligibility for health insurance or your health insurance premium, contribution amounts or terms of coverage.
Sometimes health insurers need genetic information to make decisions about paying for certain tests or treatments. It is legal for them to ask for this information. However, once they have it, they cannot use it to discriminate against you in the ways described above.
Please note, GINA does NOT prevent health insurers from making decisions about eligibility, coverage or premiums based on a person's current symptoms or diagnosis of a disease or health condition. This is true even if the condition is a genetic disease or was diagnosed in part by a genetic test.
Please also note that GINA does not apply to life, disability or long-term care insurance. If you would like life insurance, it would be wise to obtain it before having genetic testing.
What if I am worried about the emotional burden of genetic testing results?
Some patients decide they do not want to have genetic testing because of the emotional distress, burden, and weight to them and their family. This is important to think about before you have testing done. How will you feel if you learn you carry a gene mutation that increases your risk of cancer? And that your relatives could also have?
Most patients decide they would rather know if they have an increased risk of cancer, so they can have extra cancer screening starting at a younger age. But this is a personal decision for each individual.
How does a gene mutation get passed down to other family members?
If your mother or father had an anti-cancer gene mutation, there is a 50 percent chance you inherited it. This type of inheritance is called “autosomal dominant”. If you have an anti-cancer gene mutation, there is a 50 percent chance you passed it on to each of your children.
When one person in a family has genetic testing, and the gene mutation is identified, it can helps other relatives know more about their risk of cancer. If your relatives know they have the gene mutation too, then they can have cancer screening at a younger age and more often.
What causes cancer?
Most of the time cancer is sporadic. Cancer can be from environmental factors, obesity, smoking, exposures, or an unknown cause. About 10 percent of the time, a cancer is caused by an inherited anti-cancer gene mutation. A familial cluster means there is a pattern of cancers in the family, but a genetic cause cannot be identified. This could be because everyone was exposed to the same thing (for example, if everyone smoked or was overweight) or it could be because the technology and research available today cannot detect a genetic mutation.