What is genetic counselling?
Genetic counselling is the process of getting information and support from qualified professionals about genetic conditions that affect your family. It also includes information and support about genetic testing and results.
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
- what supports and services are available for your family.
People often get genetic counselling before or at the same time as genetic testing. Genetic testing involves medical tests that assess your chance of having a genetic condition as well as your chance of passing on that condition to a child.
What is a genetic condition?
A genetic condition is a condition caused by changes in genes. A change in just one gene can cause a serious medical condition or disability. Sometimes one or both parents pass on changed genes to their child. Other times changes happen 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 develop a plan for the future.
You might want genetic counselling so you can:
- understand your child’s condition or a condition your child is at risk of developing, including the likely cause of the condition and options for managing it
- understand whether you or your child’s other parent passed on genetic changes to your child
- learn more about the likelihood of passing on the condition to any future children and what to do if that happens
- plan realistically for the future
- adjust positively to the condition or to the risk of the condition in a 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 in situations like these:
- 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, and the problem might have a genetic cause.
- You’re thinking of using assisted reproductive technology to have a child.
- Prenatal testing has detected a fetal anomaly or the chance of a fetal anomaly.
- There’s concern about exposure to a chemical or environmental agent during pregnancy that might cause birth defects.
- A genetic test has been recommended for you or your child, and you’d like to understand the process, including consent and possible results.
- You’ve had a genetic test and want to understand and discuss the results.
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. That’s 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 when major health conditions appeared in family members
- the cause and age of death of family members.
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 can remember to ask them.
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 chance 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 and understood your concerns
- have thought about how to handle the situation as a 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 to change things in your life once you know the results of the testing
- how much support you’re going to need.
Genetic counselling services and support
Australasian Society of Genetic Counsellors
The Australasian Society of Genetic Counsellors provides information about genetic counselling and has a list of genetic counselling services across Australia, along with other clinical genetic services.
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.
Genetic Support Network of Victoria
The Genetic Support Network of Victoria provides education, advocacy and support to people with genetic conditions and those who support them. They can help you contact genetic counsellors and many support groups across Australia.