Frequently Asked Questions
- What is genetic counseling?
- How do I prepare for my genetic counseling appointment?
- What is genetic testing?
- Will insurance cover the cost of my genetic testing?
- I don’t have health insurance. Can I still have testing?
- Can my health insurance company use genetic testing results against me?
- Can I be discriminated against based on the results of my genetic testing?
- Who in my family needs to get testing?
- Who in my family needs genetic testing now that we know of a mutation?
- Will insurance cover my family member’s testing?
- If positive, will insurance cover my family member’s screenings/surgeries?
- At what age should my family members be tested?
- Does my family member need my result in order to be tested?
- Which testing will my family members need?
- Do family members who are not related by blood need to have genetic testing?
Genetic counseling involves meeting with a trained genetic counselor, who will be able to perform a risk assessment based on your family history, personal risk factors, and other information to determine if genetic testing is appropriate. A genetic counselor will also be able to work with you and your doctor to help develop an individualized care plan based on your individual risks.
It’s important to gather as much information about your own medical history as possible. If available, bring a copy of your medical records to your appointment.
It’s also important to discuss your family history with your relatives to make sure you are aware of who in the family had cancer, what type of cancer they had, how old they were when they were diagnosed, specific treatments, etc. If other relatives have had genetic testing, it’s useful to have a copy of their results to make sure appropriate testing is ordered for you.
Prior to a genetic risk assessment at UT Southwestern, you will be asked to fill out our online questionnaire called CancerGene Connect or a paper questionnaire. The genetic counseling session may take up to an hour.
Genetic testing involves either a blood or saliva test (occasionally a skin biopsy) that analyzes different genes. This analysis is performed to determine if there is an underlying hereditary reason for the cancers in the family.
Most insurance companies cover genetic testing. However, insurance companies may have specific criteria that determine when the cost of genetic testing will be covered. Speak to your genetic counselor to make sure you meet the criteria.
For those who have limited or no insurance, the cost of genetic testing may be covered using grant funding or through financial assistance programs offered by the laboratory. Speak to your genetic counselor to determine if you qualify for such programs.
There is a federal law called GINA (Genetic Information Non-Discrimination Act) that was enacted effective 2009. This law prohibits use of genetic result information as a pre-existing condition for the purposes of major medical coverage. There are a few exclusions to the law for small group coverage and members of the military. Read more information (GINA link: genome.gov/10002077) about the GINA law.
The Genetic Information Non-Discrimination Act (GINA) prohibits use of genetic result information as a pre-existing condition for the purposes of major medical coverage or for hiring/firing purposes. There are a few exclusions to the law for small group coverage and members of the military. Read more information (GINA link: genome.gov/10002077) about the GINA law.
Usually, genetic testing is performed for someone in the family who has cancer. If this is not possible, someone who does not have cancer may consider genetic testing.
If you carry a genetic mutation, testing is typically recommended for any at-risk family member. This would include children over age 18, siblings, parents, and extended relatives (aunts/uncles, cousins, etc.). Occasionally, testing may be indicated for children under age 18. It’s usually best to determine which side of the family a mutation is inherited from. Talk to a genetic counselor about your particular situation to determine which relatives should be offered testing.
Most major insurance providers cover genetic testing when a mutation is already identified in a close family member. A genetic counselor will also be able to talk to your family member about their particular insurance coverage situation.
Most major insurance providers will cover recommended cancer screenings or other risk-reduction options when a mutation is found. This can depend on which gene has the mutation, so it is recommended that family members speak to a genetic counselor about their particular case.
Most of the hereditary cancer syndromes cause increased cancer risk for adults. This means that we usually do not recommend testing for children and teenagers until they reach the age of 18 in most cases. Some genes are associated with childhood-related cancer risk, so testing would be recommended at an earlier age in those cases. Talk to a genetic counselor about the recommendations based on the gene in question.
Not always. As long as there is a letter stating the name of the gene and exact mutation that was found, other documents can be used to verify the result outside of the result document itself. The lab or genetic counselor needs the gene and exact mutation found to make sure the correct test is ordered for your family member. Many labs or genetic counselors will want to at least try to get the actual result if possible.
They may only need to be tested for the mutation that you carry, which is called a “single-site test.” In some cases, family members may still need more genes tested outside of the known mutation. That’s why it is important to talk to a genetic counselor to discuss who can do a risk assessment and to help determine what is appropriate in their case.
In most cases, family members who are not related by blood do not need to be tested for the mutation found in the family. Some genes are associated with “autosomal recessive” conditions, which are usually associated with childhood disease/symptoms. Autosomal recessive inheritance means that someone inherits a mutation from BOTH parents. In these cases, testing the partner of someone found to carry a mutation might be important to determine risks to a child. Talking to a prenatal genetic counselor during a pregnancy or prior to family planning can help determine if this testing is necessary.