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Genetic Counseling: What to Expect

A plain-language guide to genetic counseling for inherited cancer risk — what a genetic counselor does before and after testing, and what it means for your family — based on the National Cancer Institute genetic testing fact sheet.

NCI source

Last reviewed: 2024-04-18

The short answer

A genetic counselor is a trained professional who helps you decide whether genetic testing for inherited cancer risk is right for you, and helps you understand the results. Counseling covers your family history, the pros and cons of testing, what results mean, and how they may affect relatives. It is generally recommended before, and sometimes after, testing.

  • A genetic counselor helps you decide whether testing is right and helps you understand results.

  • Counseling is generally recommended before genetic testing, and often after a positive result.

  • The counselor reviews your personal and family history to estimate inherited risk.

  • You give informed consent before testing, after learning the benefits and downsides.

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The full explanation.

The simple version

A genetic counselor is a trained professional who helps people think through genetic testing for inherited cancer risk. They are experts in how cancer can run in families and what test results mean.

Counseling is generally recommended before testing, and often after — especially when a harmful change is found. The goal is to make sure any testing is the right choice for you and that you understand the results.

Genetic counseling turns a complicated topic into clear, personal information you can act on.

What a genetic counselor does

Genetic counseling for cancer usually covers several things:

  • Reviewing your history. The counselor asks about which relatives had cancer, what kinds, and at what ages, plus your own health history.
  • Estimating inherited risk. From that picture, they judge how likely it is that an inherited change runs in your family.
  • Explaining testing. They describe which test might fit, how accurate it is, and what the results could mean.
  • Discussing pros and cons. They walk through the benefits, the downsides, and the emotional side of learning results.

This should be done by a trained genetic counselor or another professional experienced in cancer genetics.

A counselor's job is to give you the full picture so your decision is truly your own.

Before testing

Before any test, counseling helps you decide whether testing makes sense at all. Together you might consider:

  • Whether your history suggests an inherited pattern
  • Which test — and which genes — would be most useful
  • What a positive, negative, or uncertain result would mean
  • How results might affect your relatives
  • The emotional impact of learning your risk

If you decide to move ahead, you give informed consent. This means signing a form confirming you understand the test's purpose, its medical meaning, its risks and benefits, possible alternatives, and your privacy rights.

Good counseling means you never walk into a test unsure of what it might reveal.

After testing

Counseling does not always stop once results are back. After-test counseling is common, especially with a positive result. It can help you:

  • Understand exactly what your result means
  • Plan next steps, such as earlier or more frequent screening, or prevention options
  • Get referrals to support and information
  • Think through how — and whether — to share results with family

Emotional support is part of this stage too, since results can bring relief, worry, or complicated feelings.

Why family matters

Genetic tests are unusual because they can reveal information about your blood relatives, not just you. If you carry an inherited change, your siblings, children, and other relatives may share it.

Family members may feel differently about wanting to know. A genetic counselor can help you think through these conversations and can help relatives understand their own testing options.

One person's result can open the door to protecting an entire family — counseling helps handle that carefully.

Privacy and protections

A counselor can also explain how your results are protected. The federal law GINA prevents health insurers and most employers from discriminating based on genetic information, though it does not cover life, disability, or long-term care insurance, or the military. Understanding these protections can ease worries about testing.

Finding a counselor

Your doctor can often refer you to a certified genetic counselor, and cancer centers frequently have them on staff. Counseling may be available in person or by phone or video, which can make it easier to fit into your life.

Before your appointment, it helps to gather what you know about your family's cancer history — which relatives, which cancers, and at what ages. That information is the raw material a counselor uses to help you.

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Common questions

What does a genetic counselor do?

A genetic counselor is a health professional trained in cancer genetics. They review your personal and family medical history, estimate the chance that an inherited change runs in your family, explain the benefits and downsides of testing, and help you understand what results would mean for you and your relatives.

Do I have to have counseling before testing?

It is generally recommended. Counseling helps make sure the right test is chosen and that you understand what the results could mean before you decide. It also helps you give informed consent, which means agreeing to the test after learning its purpose, risks, and benefits.

What happens during a counseling session?

The counselor will usually ask detailed questions about which relatives had cancer, what types, and at what ages. They will discuss whether testing is appropriate, which test fits your situation, and the possible results. They also cover the emotional side and what results might mean for family members.

Is there counseling after testing too?

Often yes, especially if a harmful change is found. After-test counseling helps you understand a positive, negative, or uncertain result, plan next steps like screening or prevention, and think through how and whether to share the information with relatives.

How do I find a genetic counselor?

Your doctor can often refer you, and some testing is arranged through cancer centers. Counseling can be in person or by phone or video. Your care team or a cancer information service can help you locate a certified genetic counselor.

Will counseling tell me if I'll get cancer?

No. Genetic counseling and testing deal with risk, not certainty. Even a positive result means an increased chance of certain cancers, not that cancer will definitely happen. Counseling helps you understand and manage that risk.

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Genetic Counseling: What to Expect