Genetic counselling: a guide for parents

Genetic counselling: a guide for parents

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What is genetic counselling?

Genetic counselling is the process of getting information from qualified professionals about the genetic condition or conditions that affect your family.

If you have a genetic condition in your family, genetic counselling can help you learn about:

  • how the condition might progress
  • how your family life might change because of the condition
  • how likely it is that other family members will get the condition
  • how you can manage the condition in your family.

People often get genetic counselling before or at the same time as genetic testing. Genetic testing is medical tests for people who have symptoms or a family history of a genetic condition. Genetic testing can tell you how likely it is that you might pass a genetic condition on to a child.

What is a genetic condition?

A genetic condition is a condition caused by changes in genes. A change or mistake in just one gene can cause a serious medical condition or disability. Sometimes one or both parents pass on changed or abnormal genes to their child. Other times changes happen in a baby's genes at or during conception.

Aims of genetic counselling

If you have a child with a genetic condition, genetic counselling can help you and your family understand the diagnosis and adjust to it.

You might want genetic counselling so you can:

  • understand the medical facts about your child's condition - including the diagnosis, the likely cause of the condition and the options for managing it
  • understand whether you or your child's other parent passed on genetic changes to your child
  • learn more about what the risk is, and how to deal with it if you have more children
  • plan realistically for the future
  • adjust in the most positive ways to the condition or to the risk of the condition in another family member.

Some people also seek counselling to confirm what they've learned online. Others want help thinking about decisions they need to make, or support for decisions they've already made.

Many people find that genetic counselling is very helpful and informative.

When to seek genetic counselling

Genetic counselling can help when:

  • a condition seems to run in the family and there's concern that you or your children might develop it
  • a child in the family has a serious problem that affects growth, development or health, possibly linked with a genetic cause
  • two people who are closely related are thinking of having a child together
  • prenatal testing has detected a fetal abnormality or a risk of a fetal abnormality
  • there's concern about exposure to some chemical or environmental agent during pregnancy that might cause birth defects.

You might also be referred for genetic counselling as part of a diagnosis or to manage a genetic condition.

Preparing for genetic counselling

Before you go to a genetic counselling session, it's a good idea to find out as much as you can about your family's medical history, because you'll be asked to give the counsellor detailed information.

This might include:

  • your relation to each family member, including whether family members are adopted or half-relatives
  • any major health conditions that affect each family member and any relevant pregnancy history like miscarriage
  • the age of onset of each condition
  • the cause and age of death of family members (if relevant).
You'll probably have many questions - for example, about the genetic condition that affects your family, the testing or diagnosis process and so on. It's a good idea to write down your questions before your counselling sessions so you don't forget to ask.

What to expect at a genetic counselling session

During a genetic counselling session, you'll speak to a genetic counsellor. The counsellor might:

  • ask for your family history
  • make or confirm a diagnosis, or let you know there's no genetic condition present
  • work out the risk of other family members getting the condition you're concerned about
  • talk about how the condition will affect your child, and how you might handle this
  • send you to support agencies or other medical professionals
  • give you verbal and written information about the condition.

The counsellor might also organise further testing if you need it.

After a counselling session, you should expect to:

  • know more about the condition and/or genetic tests that you're interested in
  • feel supported because the counsellor has listened to you, understood your concerns, and encouraged you
  • have thought about how to handle the situation as a family - sessions are designed to help the whole family
  • have the information and support you need to make your own decisions about genetic conditions and/or treatments
  • know where to go for information and support for decision-making, complications and emotional ups and downs in the future.

Following up after a counselling session

Genetic counsellors don't make decisions for you. Their role is to give you relevant and accurate information, help you think about the options, and support you as you make decisions.

These decisions might include:

  • whether to have genetic testing done
  • who to tell about the results of the test
  • whether you want medical treatment (if it's available)
  • how you're going to live your life in response to the results of the testing
  • how much support you're going to need.

Genetic counselling services and support

Centre for Genetics Education
The Centre has a comprehensive list of genetic counselling services across Australia. You can find your local service by contacting the Centre:

Royal North Shore Hospital Community Health Centre
Level 5, 2c Herbert Street
St Leonards NSW 2065
Phone: (02) 9462 9599
Email: [email protected]

Genetic Alliance Australia
Genetic Alliance Australia, formerly Association of Genetic Support of Australasia, can give you information and support after the diagnosis of a genetic condition in your family. Contact Genetic Alliance Australia:

Garvan Institute of Medical Research L6
384 Victoria Street
Darlinghurst NSW 2010
Phone: (02) 9295 8359
Email: [email protected]
Genetic Support Network of Victoria
The Genetic Support Network of Victoria can help you contact many support groups across Australia. Contact the Network:

Murdoch Children's Research Institute
Royal Children's Hospital
Flemington Rd
Parkville VIC 3052
Phone: (03) 8341 6315
Email: [email protected]
Genetic and Rare Diseases Network (GaRDN)
GaRDN can give you information and support. Contact GaRDN:

Suite 7, Oasis Lotteries House
37 Hampden Road
Nedlands WA 6009
Phone: 1300 770 995
Email: [email protected]