About 10% of people diagnosed with MND have a ‘familial’ form of the condition; that is, there is or has been more than one affected person in a family. The remaining 90% of people with MND are the only affected person in their family and are said to have ‘sporadic’ MND. Most people with MND have the sporadic form and so it is not a genetic or inherited form of the condition and so will not be passed on in families.
The inherited form of MND can be passed on in future generations and so can affect multiple family members over time. People who have this form of MND have inherited an error in their genetic instructions from one of their parents. This error is called a mutation and it causes the gene that contains the error to work incorrectly. If a person has an MND-related genetic mutation each of their children has a 50/50 chance of inheriting the MND-related genetic mutation.
Clinical genetic testing can be quite a sensitive and complex process. An initial stage of this process is a genetic counselling session and initial consultation. Part of the genetics counselling process would involve advising potential outcomes, costs involved, and ramifications of testing. The cost is dependent on what the patient’s needs are, the clinic that they have their genetic counselling/geneticist consult, and where the actual blood sample is obtained following that initial counselling process.
If you would like to access genetic testing then you will need a referral from your GP that details that you require genetic testing as you have a family history of MND. Genetic testing for individuals with a family history of MND/Dementia, can either go through the local public health service at little or no cost (it should be covered by Medicare, however there is often a wait list for these services).
Alternatively, you can arrange testing privately through clinics, such as Macquarie Neurology in Sydney, and pay for the testing (the initial consultation with Macquarie is covered by Medicare, as long as accompanied with a valid referral from your GP).
For a list of Genetic Clinics and general information on genetic testing see:
- Genetic clinics - General Genetics Clinics — Centre for Genetics Education
- General information for Consumers - Human Genetics Society of Australasia (hgsa.org.au)
Should I have predictive genetic testing for MND?
This online interactive decision tool is for you if:
- You have a family history of MND
- You are planning a family with someone who has a family history of MND
- You are considering being tested for MND related genes
This decision tool is designed to help you and your family discuss your choices and summarizes the information you need to help make decisions about predictive genetic testing for MND. Find out more here: MND Patient Decision Support
- For more general information on the genetics of MND, the discovery and names of known gene mutations, factors to consider with genetic testing and more, please visit: Familial MND and genetic testing | MND Australia
- You may also like to read our blog post, which includes some video presentations and further sources of information: The genetics of MND | MND NSW