Psychological Impacts of Genetic Testing for Motor Neurone Disease (MND)/
Amyotrophic Lateral Sclerosis (ALS)

What is the study about?

This study aims to understand why at-risk individuals choose (or choose not) to receive predictive genetic testing for MND/ALS. We also aim to discover the psychological impacts of receiving or not receiving genetic testing for MND/ALS.

By answering these questions, we hope to develop supportive interventions that not only guide at-risk individuals in making the best decisions for themselves regarding predictive genetic testing, but that also help them to deal with the psychological consequences of MND/ALS.

This study involves a short online survey (link below) which takes approximately 35 minutes to complete.

Who is eligible to participate in this study?

We are looking for participants who are at-risk of developing familial (or inherited/genetic) forms of MND/ALS. For example, participants with a known family history of MND/ALS.

You do not have to live in Australia to participate in this study - it is open to anyone over 18 years old.

The second page of the survey (link below) will confirm if you are eligible to participate in our study.

Do participants get paid for participating in this study?

In exchange for completing the survey, participants can nominate a charity of their choice (must be verified as a charity on a government website) to receive $15 AUD. Participants will enter the charity name in a separate form after completing the survey response. We do not ask for any credit card or bank details.

Who can I contact about this study?

If you have any questions or concerns, or simply would just like to know more about this study, please email

Read more about BSL

The Behavioural Sciences Laboratory (BSL) is led by Professor Melissa Norberg at Macquarie University.