Iconic Community / 28 Apr, 2020

Genetic counselling: Who it’s for and what to expect

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For people who have a family history of cancer, genetic counselling is a path you may wish to take in order to determine any predisposed or elevated risks you have in developing cancer. Genetic counselling is the first step to take before undergoing any form of genetic testing.

There’s hereditary cancer in my family; where do I start?

Your doctor will be able to advise you on the most appropriate course of action, which may include referral to a genetic counsellor.

Risk factors for hereditary cancer

If you have any concerns whatsoever about your genetic family history and whether it is putting you at risk of developing cancer, it’s recommended you speak with a genetic counsellor.

Criteria for hereditary cancer includes:1

  • Numerous family members have developed cancer
  • An unusually young age cancer diagnosis
  • Same cancer types amongst immediate relatives, e.g. mother, daughter and sisters with breast cancer or father and son with colorectal cancer
  • Multiple forms of cancer diagnoses within one individual
  • Cancer diagnosis in a set of paired organs, e.g. breasts or kidneys
  • Unusual cancer types including, breast cancer in men
  • Congenital disabilities associated with inherited cancer syndromes, e.g. benign skin growths and neurofibromatosis type 1
  • Belong to ethnicity/race predisposed to a particular type of cancer

It is strongly suggested you seek genetic counselling should you meet any or multiple points of the criteria.

What to expect from genetic counselling?

Genetic counselling is provided before and after genetic testing by a specialist health care professional. Genetic counselling supports you or your family members to understand the genetic testing process and the counsellor can provide unbiased information on what to expect.

Since genetic testing affects every person differently, taking part in genetic counselling can prepare you or your family for any emotional and psychological impacts both before and following the test.

What’s covered in a genetic counselling session?

Your genetic counselling will discuss various aspects of genetic testing before you begin the process, including:2

  • A hereditary cancer risk assessment based on personal and family medical history
  • Whether genetic testing is appropriate for you
  • The benefits or risk associated with testing
  • Implications of test results
  • What happens if you results display an unknown variant
  • Psychological benefits and potential risks
  • Chances of passing variants on to children
  • Family testing and its impact
  • Suitability and recommend tests to undergo
  • Preventative care options
  • Support groups and resources

Complications sometimes arise when a family member is exploring genetic testing, while other relatives do not want to know anything about it. This is where a qualified genetic counsellor plays a pivotal role. Their guidance can help you to navigate any challenging discussions or decide how best to approach conversations specific to you and your family.

Based on your assessment, your counsellor will advise you if you’re suitable for genetic testing. If eligible, before you can proceed, you’ll be required to provide written consent to your genetic counsellor, formally agreeing to undergo genetic testing.

Following genetic testing, your genetic counsellor will discuss your results and what this means for you.

You may receive one of three different results:

  • Positive – indicating that you have a genetic mutation and are at greater risk of certain cancers, which may also affect your family members.
  • Negative – meaning you don’t carry a genetic mutation, if this is a true negative result. However results may also be unclear, as there is a low possibility that genetic testing could have missed a known mutation.
  • Variant of unknown significance (VUS) – where your results find an ambiguous genetic mutation that has not previously been associated with an increased risk of cancer.

Further reading

Icon’s Young Women’s Cancer Program can help

Icon’s Young Women’s Cancer Program connects young women with appropriate genetic counselling and testing, and if positive, counselling and testing may also be extended to family members. To find out more, click here.

References

For a full list of references, click here.
  1. Genetic Testing for Inherited Cancer Susceptibility Syndromes. National Cancer Institute. Retrieved 18th March, 2020. https://www.cancer.gov/about-cancer/causes-prevention/genetics/genetic-testing-fact-sheet#who-should-consider-genetic-testing-for-cancer-risk
  2. What is the role of genetic counseling in genetic testing for a hereditary cancer syndrome? National Cancer Institute. Retrieved 18th March, 2020. https://www.cancer.gov/about-cancer/causes-prevention/genetics/genetic-testing-fact-sheet#who-should-consider-genetic-testing-for-cancer-risk
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