Click here to download all the Genetic Testing information presented in this section in PDF format.

This information has been prepared for people who wish to learn about genetic testing or donating blood to further research into Motor Neurone Disease (MND).

You can click on the links below or just scroll down the page investigating the areas you would like more information on.

• What is MND?
• Current Research
• Relevance Of The Discovery Of The SOD1 Gene
• Some Issues Associated With Testing For SOD1 Mutations
• Can Children Be Tested?
• Testing Must Be Voluntary
• FAQ (Frequently Asked Questions)
• Further Info
• The MND Associations - What Role Do They Play?
• Genetic Services
• Acknowledgements
• Download Genetic Testing Factsheet in PDF Format

The term MND is used to describe a progressive degenerative disorder of certain nerve cells in the spinal cord and brain called 'motor neurones'.

There has been, and continues to be, wide-ranging research on familial MND. Researchers are carrying out further studies to:

It is now possible to test for mutations in the SOD1 gene. To date, over one hundred different mutations have been identified in this gene.

Reasons I might want to either know or not know if I had the gene are discussed below.

In general, children under 18 years of age should not be tested. Anyone having this test must be able to give consent. They need to understand and accept the testing process and the implications of the test result.

While each person will consider the views and feelings of family and friends, the final decision must be taken by the individual concerned. It would be inappropriate for someone to take the test because of pressure to do so.

• How is the test performed?
• Can DNA be stored?
• Can I give a blood specimen for research, but without getting the result?
• What happens if I later want to know the result?
• Will the test result be kept confidential?
• Who can provide support for those taking the test?

If you would like to support research in this way, please contact your local MND Association to check if arrangements are in place for you to donate a blood sample.

• Provide guidance and advice for people with MND, families and health professionals
• Produce and disseminate information
• Fundraise and advocate to promote further research.
• Advocate for the development of clinical programs which have a written protocol and provide full counselling and support for those taking the test
• Promote the sharing of knowledge and experience as research proceeds and clinical testing programs expand
• Support clinical programs which provide diagnostic testing.

Genetic Counselling Clinics operate at many different locations throughout Australia. For further information about genetic testing and related matters contact one of the following services to find out about your nearest Clinic.

Produced by:

MND Association of Australia Inc

Registered Assoc. No. A26113K, ABN 52 650 269 176

National Freecall 1800 777 175

Email: Click This e-mail address is being protected from spambots. You need JavaScript enabled to view it to email the MND Association.

Internet: www.mndaust.asn.au 

© MND Association of Australia Inc. July 2003 - Reviewed by MND Victoria October 2006

The MND Association of Australia is indebted to the Genetic Support Network of Victoria for funding support provided to update and reprint this information.

Click here to download all the Genetic Testing information presented in this section in PDF format.