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Genetic Counselling

If your family is affected by a genetic condition, a genetic counsellor can be an excellent source of support and information.

What is genetic counselling?

Genetic counselling is the process of getting information from medical professionals about a genetic condition that affects you or your family. Genetic counsellors can give you information and help you make informed decisions about living with the condition.

Genetic counselling can help you learn about:

  • How your life, or your family’s life, might be impacted by the condition
  • How the condition might progress over time to help you plan realistically for the future
  • What you can do to manage the condition, now and as the condition progresses
  • How likely it is that other family members will get the condition
  • Whether the condition is likely to affect future children or generations of your family
  • How you might be able to connect with other families with similar genetic conditions

During a genetic counselling consultation, the counsellor may discuss the following issues with you:

  • Information about the condition
    • Key clinical features
    • Genetic contribution to the cause of the condition, including gene(s) involved, inheritance pattern, likelihood that a person who inherits the genetic susceptibility will develop the condition
    • Interactions between genes and the interplay between genes and the environment.
  • Information about genetic testing
    • Availability of testing
    • Advantages and disadvantages for deciding whether to undergo genetic testing
    • Understanding and using genetic test results
    • Implications for family members
    • Medical and psychological implications
    • Implications for future reproductive choices, employment and insurance
    • Issues concerning the privacy and confidentiality of genetic information.

The information above is from 'Genomics for General Practitioners', the Royal Australian College of General Practitioners.

Who provides genetic counselling?

A genetic counsellor is a doctor who has undertaken a further two years study to enable accreditation as a genetic counsellor in Australia.

When would I need to see a genetic counsellor?

Your GP or another healthcare professional may refer you to see a genetic counsellor if you or your child has been diagnosed with a neuromuscular condition or there is a known neuromuscular condition in your family and you are concerned that you or your children may develop the condition.

How do I find a genetic counsellor?

The availability of genetics services will vary throughout Australian states and territories. Most clinical genetics services require a letter or phone call from a referring health professional. You can ask your GP, medical specialist or other health care professional for a referral to a genetic counselling service.

The Centre for Genetics Education, NSW Health has a list of general genetics clinics in each State and Territory.

You can also find a genetic counsellor in your State or Territory on the Human Genetics Society of Australia website.

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