Ethics of the Use of Social Media as Training Data for AI Models Used for Digital Phenotyping

Digital phenotyping, or personal sensing, is a field of research that seeks to quantify traits and characteristics of people using digital technologies, usually for health care purposes. In this commentary, we discuss emerging ethical issues regarding the use of social media as training data for artificial intelligence (AI) models used for digital phenotyping. In particular, we describe the ethical need for explicit consent from social media users, particularly in cases where sensitive information such as labels related to neurodiversity are scraped. We also advocate for the use of community-based participatory design principles when developing health care AI models using social media data.