Frequently Asked Questions

What is a genetic counselor and what do they do? 

Genetic counselors are health care professionals with specialized graduate training in the areas of medical genetics and counseling. They work as health care team members and provide information and support to individuals or families who have genetic disorders or may be at risk for inherited conditions. 

How do I find a genetic counselor in my area?

You can find a genetic counselor in your area by using this tool from the National Society of Genetic Counselors.

How is genetic testing performed? 

As part of your genetics evaluation, the genetic counselor will discuss what tests are available for the condition that is running in your family and how such tests may benefit you and your family. The genetic testing can be done from a blood or saliva sample, which is collected at your appointment and then sent to a laboratory for analysis. Results are typically ready in three to four weeks and will be discussed in person at a follow-up appointment.   

Are genetic counseling and genetic testing covered by insurance? 

Genetic counseling is typically covered by medical insurance. However, it is important to check with your insurance company to find out about your specific coverage and whether you will need a referral. You can ask your insurance provider if they cover the CPT billing code for genetic counseling, which is 96040. For a telemedicine visit, the CPT code is 96040-GT. If you are seeking preauthorization, please ask for six units (three hours total) to ensure coverage for follow-up visits.

Medical insurance will also cover the costs of genetic testing when it is medically warranted and recommended by a physician or other health care provider. However, insurance companies have different policies about which tests are covered and by how much. Some insurers have specific requirements about what indications or reasons for testing qualify for coverage. To keep the cost to families as low as possible, we prefer to use genetic testing labs that will check your insurance coverage prior to running the test, alert you to any significant out-of-pocket costs and allow you to cancel the test if you decide the expected cost is too high.

How can I get the information from my appointment to my doctor and my family members? 

After each appointment, the genetic counselor writes a letter summarizing what was discussed at the visit. This letter is sent to you and to the physician who referred you. To help communicate with your family members, the genetic counselor can also write a family letter that describes what heart condition they are at risk for, what cardiology screening they should have and what genetic testing is available.

How do I make an appointment? 

Existing patients of the Betty Irene Moore Children’s Heart Center can make an appointment with a genetic counselor by calling the front desk at (650) 721-2121 or (800) 721-5470. If your child is new to our center, please ask your child's primary care physician or family cardiologist for a referral. Complete referral instructions can be found here. For all new patients, the initial genetic counseling visit should also include an appointment with one of our cardiologists.

What should I do if a loved one just died unexpectedly at a young age? 

If someone in your family dies suddenly before the age of 50, particularly when a cardiac cause is suspected, there are time-sensitive steps that should be taken immediately. These steps will increase the chance that your family can learn whether a hereditary heart disease was the cause of death and whether other family members are at risk. The most important steps you should take immediately are to request an autopsy and save a blood sample or fresh-frozen tissue sample for possible genetic testing. Please see the Sudden Cardiac Death page for additional information.