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Paper Presentation

Clinical Ethics

Session: Data and the Public

What's in your voice? Examining patients' perceptions and concerns about the collection, sharing and storage of voice data

Saturday, September 21, 2024
8:45 AM – 9:45 AM CT
Location: Midway 5 (First Floor)
Abstract: The rapid advancement of AI-based technology utilizing voice data as a biomarker for disease detection presents promising opportunities. However, the effectiveness of AI solutions hinges on access to large, high-quality, labelled databases. While voice data collection is cost-effective, non-invasive, and feasible even in low-resource settings, there exists a critical gap in understanding the ethical, legal, and social implications associated with this practice. This presentation addresses this gap by presenting findings from semi-directed interviews conducted with individuals in the United States and Canada diagnosed with vocal pathologies, neurological disorders, mood disorders, and respiratory conditions, as well as those without such ailments. By exploring their perceptions of the risks associated with contributing their voice to databases and their perspectives on various strategies pertaining to data collection, storage, and sharing, this study sheds light on those novel ethical considerations. The insights gleaned from these interviews hold significant implications for the bioethics community, offering a foundational framework for approaching the collection of digital biomarkers in a patient-centric manner. By fostering trustworthiness throughout the voice data continuum (from data collection to downstream clinical usages), this talk seeks to highlight what should be cornerstones to promoting ethical data practices and enhance public engagement and confidence in the utilization of voice data for healthcare advancements.

Learning Objectives:

After participating in this conference, attendees should be able to:
  • Understand the considerations guiding patients and people’s decision to donate their voice to a voice data repository.
  • Explore how normative values can be incorporated into the design process of voice databases to build ethical and trustworthy voice databases and voice AI technologies.
  • Reflect on balancing considerations important for patients and people with the needs of voice AI research and development.
Sana Baban – The Hastings Center; Briana Lopez-Patino – The Hastings Center; Jean-Christophe Bélisle-Pipon, PhD – Assistant Professor, Health Sciences, Faculty of Health Sciences, Simon Fraser University; Vardit Ravitsky, PhD – The Hastings Center