Genetic counselling provides information about genetic conditions like mito, such as, how they are inherited and what it means for you. It can help you make decisions about your health care and personal circumstances.

Why see a genetic health professional?

You can talk to a genetic health professional if you want to learn more about mito. A genetic health professional can be a genetic counsellor or a clinical geneticist. They can explain how mito may impact you and your family, explain genetic tests and help you understand the results.

Eligibility for public-funded genetic testing varies between states and clinical genetic services. A genetic health professional can discuss available tests and any applicable costs. If you or your family members are worried about passing on mito to future children, you can ask a genetic health professional for advice on reproductive options.

Genetic counselling is explained in more detail here.

Genetic testing is usually ordered by a specialist doctor, not your GP. You can speak to your specialist or ask for a referral to a clinical genetics service. Clinical genetics services can provide up-to-date information on testing options and provide genetic counselling services to help you make an informed decision about testing. Medicare funding is only available for tests ordered by a specialist doctor.

The genetics team may include all or a few of the following health professionals:

Genetic counsellor

Genetic counsellors are university-trained health professionals who help families with genetic conditions like mito. They provide information and support.

Clinical geneticist

Is a specialist medical practitioner who works alongside your care team to find a genetic diagnosis for the family.

Social workers

Collaborate with your extended care team and support groups to provide emotional and social support to you and your family.

What to expect at a genetic counselling appointment.

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The consultation is tailored to the individual or the family’s needs and typically involves the following:

  • Discussing genetic testing and the potential results
  • Discussing information about the specific type of mito that affects your family
  • Genetic services might reach out to you before your appointment to gather details about your immediate and extended family. This is for drawing up a family tree.
  • Identifying people that may be at risk, based on the family tree
  • Assessing the risk of you and your partner passing on mito to your future children and discussing possible reproductive options and testing options during pregnancy.
  • Support and advice for the adult or child affected by mito
  • Assistance with decision-making
  • Referrals to support groups

To get genetic counselling, ask your doctor or another health professional for a referral. You can find genetic services in the public or private health system. The requirements, wait times, and fees may differ. You can enquire about these directly with your local clinical genetic service.

Disclaimer: Resources provided by the Australian Mitochondrial Disease Foundation Limited (Mito Foundation), offers general information and is not a substitute for medical advice. It is essential to assess the suitability of the content for your individual circumstances and make decisions based on your medical condition. The information’s accuracy is subject to change, and we do not guarantee ongoing currency or availability. While efforts are made to ensure accuracy, Mito Foundation is not obligated to provide updated information. The copyright for this document and its content belongs to, or is licensed to, Mito Foundation, and reproduction without prior written consent is prohibited.

Author(s): Mito Foundation
Reviewer(s): David Thorburn BSc(Hons) PhD FHGSA FFSc(RCPA) FAHMS,  Suzanne Sallevelt MD PhD FRACP and members of the mito community.
Version: 2
Date published:  30 January 2024