#28-Predictive testing in ALS: How do patients make decisions?

In this episode, we discuss the complexities of predictive genetic testing in Amyotrophic Lateral Sclerosis (ALS) from Dr. Jade Howard's recent study. Learn how it impacts decision-making and what it means for families.

Article: “Predictive genetic testing in amyotrophic lateral sclerosis (ALS): Experiences of decision-making and engagement with UK genetic counseling services”

In this episode we discuss:

- The decision-making process surrounding predictive testing

- Navigating family dynamics and personal goals

- The uncertainty that comes with genetic risks

- The need for tailored communication and ongoing support after testing

Guest Bio:

Dr Jade Howard is a postdoctoral researcher at Sheffield Institute for Translational Neuroscience, University of Sheffield, UK. Her research focuses on genetic testing in motor neuron disease (MND/ALS), and the development of interventions to help families navigate decisions around testing and the disclosure of results.

Resources:

- This research is being led by PI Dr Alisdair McNeill, with the support of the study team Prof Hilary Bekker and Prof Chris McDermott, and a project steering committee. The team are grateful to The MND Association for funding this work and all the participants who took part.

- If you are interested in the decision aids discussed in this podcast, they can be found here: https://mymndgenetest.shef.ac.uk/