Familial MND and genetic testing

Genetic Testing

• How do I access genetic testing and counselling?

  iAdds context

  “Whether genetic testing and counselling are available, how they are paid for and how the process works differ from place to place.”

  Shows what that looks like in one country. Some Australian services give subsidised or free testing, but only for people with a diagnosis or a known family gene change, and the cost otherwise depends on whether the testing is diagnostic or predictive and on public or private services.

  Some genetic services may give subsidised or free testing for MND-related genes.

  Testing costs

• What are the implications for me and my family?

  iAdds context

  “Legal protections around genetic information, including its use by insurers, differ a great deal between countries.”

  Shows a different country at a different point. Australia legislated in April 2026 to stop life insurers refusing cover or charging more because of a genetic test result, the ban starts in October 2026, and until then only cover below a set amount is protected.

  The Australian Government passed legislation to ban life insurers from refusing cover or increasing charges due to genetic test results in April 2026.

  Life insurance

• What are the implications for me and my family?

  ✓Supports this

  “Adult relatives who do not have ALS/MND may be able to have predictive testing to find out whether they carry a genetic change, and it is usually only available where a gene change is already known in the family.”

  Carries the precondition the statement now states. Predictive testing is usually only available where a gene change is already known in the family, and only a trained genetic specialist can order it. Where there is a family history but no known gene change, counselling may still be available to discuss risk. It gives no age for who can be tested.

  Predictive genetic testing is usually only accessible when there is a known MND-related gene change in the family.

  Predictive genetic testing and MND

• What is genetic testing in ALS/MND, and is MND inherited?

  ✓Supports this

  “Most people with ALS/MND do not have an inherited form of the condition.”

  Puts inherited MND at around 15% of people diagnosed, which leaves the large majority without a gene change passed down from a parent.

  In around 15% of people diagnosed with MND, a gene change is present and inherited from a parent.

  Familial or inherited MND

• Why might I consider genetic testing, and what could it tell me?

  iAdds context

  “For some people, a genetic test result is relevant to decisions about having children.”

  Sets out what those options are: testing embryos through IVF, testing during pregnancy, donor eggs or sperm, and having children without testing. It also describes exclusion testing, for someone who wants to protect a future child without learning their own status. The services and funding it describes are Australian.

  If you don't want to know if you have inherited the gene change, exclusion testing may be an option.

  I don't want to know if I carry my family's gene change. Can I still access testing to inform family planning?