Genetic counselling

All family cancer centres have genetic counsellors on staff that can:

  • provide information, support and counselling to individuals and families
  • clarify your risk of having inherited a changed cancer gene based on your family history
  • discuss what management plans may be appropriate
  • discuss the limitations, potential benefits, disadvantages and appropriateness of genetic testing.

Genetic counsellors work with other medical professionals, like cancer specialists, to provide appropriate medical management plans. 

There are many important medical, ethical, social and legal issues to be considered before having genetic testing. These can be discussed with a genetic counsellor. You'll have counselling before and after genetic testing to discuss its limitations as well as potential benefits.

Below are some of the issues genetic counsellors will help you to consider.

Potential consequences of genetic testing

How much a genetic test can help depends on:

  • How accurately a test can predict the level of risk
  • If there's a high risk, whether anything can be done to lessen it
  • Whether anything can be done that's seen to be useful by the person being tested

Possible benefits for those found to have a changed gene

  • Testing can remove uncertainty about whether or not you have a higher risk of getting cancer than the general population
  • You can get a more accurate estimate of your risk than you can get from just looking at your family history
  • You can learn what risk your children have of carrying a changed gene; you can then help advise your children about whether or not they should also be tested
  • You can make more informed decisions about family planning, such as getting pregnant and having foetal testing
  • You'll be better advised regarding surveillance and prevention

Possible disadvantages for those found to have a changed gene

  • You may feel anxious, afraid or depressed because of worry for yourself and your future
  • If you have children, you may feel anxious and guilty that they're at a higher risk
  • Making decisions about having children in the future may become more complex and difficult
  • It can be stressful having to bring ‘bad news’ to the family
  • Family relationships can be put under strain
  • You may be uncertain and worried about the impact your test result may have on things like work and life insurance
  • You may feel anxious about whether your test result could be misused, now or in the future

Possible benefits for those found NOT to carry a changed gene

  • No more uncertainty for you or your children about your risk. Your risk of developing the cancer you were tested for is about the same as the general population
  • You will not need to undergo unnecessary extra surveillance

Possible disadvantages for those found NOT to carry a changed gene

  • You may feel guilty that you've been ‘spared’ while others in the family remain at risk
  • Family relationships can be put under strain
  • You may feel a loss of identity
  • You may not fully believe the test results and continue to worry about your risk.

Where can I have genetic testing?

If you have a strong family history of cancer you may wish to learn more about genetic testing. Contact your doctor or nearest family cancer centre.

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