Publication Title
American Journal of Bioethics
Volume
24
Page
69
Year
2024
Abstract
Psychiatry is rapidly adopting digital phenotyping and artificial intelligence/machine learning tools to study mental illness based on tracking participants’ locations, online activity, phone and text message usage, heart rate, sleep, physical activity, and more. Existing ethical frame-works for return of individual research results (IRRs) are inadequate to guide researchers for when, if, and how to return this unprecedented number of potentially sensitive results about each participant’s real-world behavior. To address this gap, we convened an interdisciplinary expert working group, supported by a National Institute of Mental Health grant. Building on established guidelines and the emerging norm of returning results in participant-centered research, we present a novel framework specific to the ethical, legal, and social implications of returning IRRs in digital phenotyping research. Our framework offers researchers, clinicians, and Institutional Review Boards (IRBs) urgently needed guidance, and the principles developed here in the context of psychiatry will be readily adaptable to other therapeutic areas.
Recommended Citation
Francis X. Shen, Matthew L. Baum, Nicole Martinez-Martin, Adam S. Miner, Melissa Abraham, Catherine A. Brownstein, Nathan Cortez, Barbara J. Evans, Laura T. Germine, David C. Grady, Ingrid A. Holm, Elisa A. Hurley, Sara Kimble, Gabriel Lazaro-Munoz, Kimberlyn Leary, Mason Marks, Patrick J. Monette, Jukka-Pekka Onnela, P. Pearl O'Rourke, Scott L. Rauch, Carmel Shachar, Srijan Sen, Ipsit Vahia, Jason L. Vassy, Justin T. Baker, Barbara E. Bierer, and Benjamin C. Silverman, Returning Individual Research Results from Digital Phenotyping in Psychiatry, 24 Am. J. Bioethics 69 (2024), available at https://scholarship.law.umn.edu/faculty_articles/1167.
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