Empowering Communication: An Exploratory Qualitative Study of the Perception of Voice Cloning in Persons with Amyotrophic Lateral Sclerosis
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that often leads to severe speech impairment and, in most cases, the loss of functional speech within a short period after symptom onset. To maintain communication, individuals with ALS rely on augmentative and alternative communication (AAC) tools, including emerging technologies such as AI-based voice cloning. Unlike traditional voice banking methods, voice cloning can offer faster setup, greater flexibility, and potentially more natural-sounding synthetic voices, but its acceptability and perceived value among users remain poorly understood.
This study explores how English-speaking persons living with ALS in Quebec perceive voice cloning technology, particularly in terms of ethics, usability, emotional resonance, and identity preservation. It also examines whether perceptions of naturalness, expressiveness, and identity differ according to the severity of speech impairment. The goal is to better understand user perspectives to support the ethical and patient-centred integration of voice cloning technologies in ALS care.