Computer perception (CP) technologies (e.g., digital phenotyping and affective computing) promise to transform precision medicine by improving personalized care in psychiatry and beyond with the use of big data and artificial intelligence (AI) to elicit and interpret information about emotional states and behavior and correlate them with other neurological features, biometrics, and genomics. While these technologies aim to offer more objective measures of internal states, enabling precision treatment, diagnosis, and prediction, the passive and continuous nature by which they often collect data from patients in non-clinical settings raises ethical issues related to privacy, data protection, and self-determination. Little is known about how such concerns may be exacerbated by integration of neural data, as parallel advances in computer perception, AI, and neurotechnology enable new insights into mental states, highlighting a need for ELSI inquiry. We present qualitative interview findings from a multi-site NCATS-funded study of ethical considerations for translating computer perception into clinical care and discuss stakeholder concerns related to 1) perceived invasiveness and privacy, 2) downstream impacts of unintended data disclosure, and 3) varying awareness of data collection and monitoring. These concerns suggest that integration of neurotechnologies with existing computer perception technologies raises novel ethical concerns around dignity-related and other social harms (e.g., stigma, discrimination), consent and return of results. These results highlight the need to effectively engage patients in systematic research into how best to implement these technologies to maximize patient empowerment and mitigate long-term risks associated with the passive collection of sensitive emotional, behavioral and neural data.
Authors: Megan Hurley, Baylor College of Medicine Center for Medical Ethics and Health Policy; Anika Sonig, Baylor College of Medicine Center for Medical Ethics and Health Policy; John Herrington, Children's Hospital of Philadelphia; Eric Storch, Baylor College of Medicine; Gabriel Lazaro-Munoz, Harvard Medical School Center for Bioethics; Jennifer Blumenthal-Barby, Baylor College of Medicine Center for Medical Ethics and Health Policy; Kristin Kostick-Quenet, Baylor College of Medicine Center for Medical Ethics and Health Policy
