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Ask an Expert: Do I Need Genetic Testing?

photo of whitney espinel sitting at a desk in front of a computer
Whitney Espinel, MMSc, board-certified genetic counselor at HCI

What is genetic testing? Why would I need it? Is it covered by insurance? These are common questions about genetic testing for cancer risks. People with a family history of cancer may be at higher risk for cancer. The HCI Family Cancer Assessment Clinic (FCAC) provides genetic counseling to help these people know if they are at an increased risk of cancer and what to do about it.

Whitney Espinel, MMSc, board-certified genetic counselor at HCI, explains what you need to know about genetic testing and genetic counseling.

How do I know if I am at a higher risk of getting cancer?

Family history of cancer can tell you a lot about your risk of getting cancer. For example, if you have a family history of breast cancer, your personal risk for breast cancer may be higher than average. In some families, the increased risk is caused by an inherited genetic change—called a mutation—that puts the family members at a greater risk to get cancer. These mutations can be inherited from a parent and passed to children. However, these mutations cause only 5–10% of all cancers. The HCI Family Cancer Assessment Clinic helps patients learn if genes play a role in their personal or family health history.

What do genetic counselors do?

Genetic counselors provide many services:

  • Review your family history and genetic testing options
  • Figure out your cancer risk
  • Find ways to lower your chances of getting cancer
  • Suggest cancer screenings
  • Interpret the results of genetic testing
  • Provide information about HCI research programs and studies

Whether or not you want a genetic test, our counselors can help you learn what kind of cancer screening is appropriate for you based on your family history.

What do you need to know about my family history?

We want as much information as you can give us, going back three generations if possible. We often ask about parents, siblings, children, aunts and uncles, grandparents, and cousins. We ask about family members who have and have not had cancer.

It’s helpful to talk to your family about their health history before your appointment. You can ask your family members these questions:

  • Has anyone in the family been diagnosed with cancer?
  • If a family member had cancer, what type of cancer was it? How old was the family member at the time of diagnosis?
  • Has anyone in the family had genetic testing?

If family members have already had genetic testing, ask if you can have a copy of the test results to review in your appointment.

What if I don’t know my full family history?

Whatever information you have is helpful. For individuals who are adopted or have no information about their biological relatives, we can use your personal history to discuss you cancer risks and options.

Do I have to get a genetic test if I have an appointment with a genetic counselor?

No. Some people just want information. Genetic testing is always optional. If you decide you don’t want testing, we can still discuss your estimated cancer risks and give you recommendations.

What happens if I decide to get a genetic test?

You will provide either a saliva sample or a blood sample. If you have your visit over the phone, we can send a saliva kit to your home.

How long does it take to get my results? What happens after?

It typically takes 2–4 weeks to get genetic testing results. We will talk about your results at a follow-up appointment or over the phone. If your test shows a genetic mutation that puts you at a higher risk of cancer, we may recommend you see a medical specialist or get certain cancer screenings. If your test does not show a genetic mutation, we make recommendations about follow-up care based on your family history of cancer. We may also recommend you discuss your results with your family members, and we may offer other relatives genetic testing depending on your test results.

What kinds of cancers does genetic testing detect?

The most common cancers with underlying genetic conditions are breast cancer, ovarian cancer, colon cancer, prostate cancer, and uterine cancer. Many gene mutations can put people at increased risk for more than one type of cancer. Your genetic counselor can tell you more about which cancers you may be at risk for.

Can I get genetic testing for one specific gene mutation?

Yes. In some families, we already know the genetic mutation causing an increased risk for cancer. In those cases, we can order testing for the specific mutation. To make sure we order the most accurate test, your genetic counselor will ask to see a copy of your relative’s genetic test results.

If no one in your family has had genetic testing and no gene mutation has been found, we may recommend testing for multiple genes at once. This test is called a multi-gene panel. Some gene panels can focus on a specific cancer type, while others can cover more than one cancer type.

If I had genetic testing years ago, should I be tested again?

Maybe. There may be updates in technology or even new genes that have been discovered since your last genetic test. A genetic counselor can review your prior test results and tell you if a new test is recommended.

What if I can’t come to an appointment in person?

Right now, all genetic counseling appointments at HCI are done over the phone because of COVID-19. After COVID-19, we will go back to having in-person appointments at the HCI Cancer Hospital, Sugar House Health Center, South Jordan Health Center, and Farmington Health Center. We also offer telemedicine appointments at some of our affiliate hospitals in Idaho and Nevada.

Does insurance cover my genetic test?

The first visit with a genetic counselor at HCI is free. If we decide to go ahead with genetic testing, the price of testing can vary. However, testing is typically covered by insurance as long as you meet certain criteria. Most patients pay less than $250 for testing. Many patients pay nothing at all. Your genetic counselor can tell you more about your estimated out-of-pocket cost during your first visit.

Will my genetic test results ever be shared with an employer, insurance company, or other entity?

No. Your health information is protected and will not be shared unless you request it. The Genetic Information Nondiscrimination Act (GINA) specifically protects employers and health insurance from using genetic information against you. GINA does not cover life insurance, long term care, or disability insurance. Your genetic information still cannot be shared with those entities without your permission. But if you are considering getting new life insurance, long-term care insurance, or disability insurance, you may want to get those plans before getting genetic testing.