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Ethics in digital phenotyping: considerations regarding Alzheimer’s disease, speech and artificial intelligence
  1. Francesca Rose Dino1,2,
  2. Peter Scott Pressman1,3,
  3. Kevin Bretonnel Cohen4,5,
  4. Veljko Dubljevic6,
  5. William Jarrold7,
  6. Peter W Foltz8,
  7. Matt DeCamp9,
  8. Mohammad H Mahoor10,
  9. Lawrence E Hunter11
  1. 1Department of Neurology, Behavioral Subsection, University of Colorado Anschutz Medical Campus School of Medicine, Aurora, Colorado, USA
  2. 2Alzheimer's and Cognition Center, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA
  3. 3Department of Neurology, Oregon Health & Science University, Portland, Oregon, USA
  4. 4School of Medicine, Computational Bioscience Program, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA
  5. 5Ukrainian Volunteer Army, Hospitallers Medical Battalion, England, UK
  6. 6Philosophy and Religious studies, North Carolina State University College of Humanities and Social Sciences, Raleigh, North Carolina, USA
  7. 7Mind and Brain AI Consulting, San Francisco, California, USA
  8. 8University of Colorado Boulder Institute of Cognitive Science, Boulder, Colorado, USA
  9. 9Center for Bioethics & Humanities, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA
  10. 10Department of Electrical & Computer Engineering, University of Denver Daniel Felix Ritchie School of Engineering & Computer Science, Denver, Colorado, USA
  11. 11Department of Pediatrics, The University of Chicago Biological Sciences Division, Chicago, Illinois, USA
  1. Correspondence to Dr Peter Scott Pressman; peter.pressman{at}cuanschutz.edu

Abstract

Artificial intelligence (AI)-based digital phenotyping, including computational speech analysis, increasingly allows for the collection of diagnostically relevant information from an ever-expanding number of sources. Such information usually assesses human behaviour, which is a consequence of the nervous system, and so digital phenotyping may be particularly helpful in diagnosing neurological illnesses such as Alzheimer’s disease. As illustrated by the use of computational speech analysis of Alzheimer’s disease, however, neurological illness also introduces ethical considerations beyond commonly recognised concerns regarding machine learning and data collection in everyday environments. Individuals’ decision-making capacity cannot be assumed. Understanding of analytical results will likely be limited even as the personal significance of those results is both highly sensitive and personal. In a traditional clinical evaluation, there is an opportunity to ensure that information is relayed in a way that is highly customised to the individual’s ability to understand results and make decisions, and privacy is closely protected. Can any such assurance be offered as digital phenotyping technology continues to advance? AI-supported digital phenotyping offers great promise in neurocognitive disorders such as Alzheimer’s disease, but it also poses ethical challenges. We outline some of these risks as well as strategies for risk mitigation.

  • Ethics
  • Dementia
  • Ethics- Medical
  • Ethics- Research

Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study.

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Data availability statement

Data sharing not applicable as no datasets generated and/or analysed for this study.

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Footnotes

  • Contributors All authors contributed to the revision of this manuscript. FRD and PSP led the incorporation of reviewer feedback and the revision of key sections. MD, VD and PWF included specific feedback on ethical concepts needing more information, using their unique relevant experience. KBC, WJ, MHM and LEH reviewed the revised manuscript, provided critical feedback and approved the final version. All authors were involved in finalising the revised manuscript and have approved the manuscript for resubmission. PSP is the guarantor for this submission. Early drafting stages of this manuscript involved OpenAI’s ChatGPT. All AI contributions were thoroughly reviewed, verified and revised by human authors to ensure accuracy and adherence to recommended standards of medical research journal integrity. The final manuscript has been significantly modified and content solely approved by the named authors.

  • Competing interests FRD has nothing to disclose. PSP has nothing to disclose. KBC has nothing to disclose. WJ has nothing to disclose. MD wishes to disclose an affiliation with the American College of Physicians through a contract with his institution for consultation on ethics policy issues. VD has nothing to disclose. PWF has nothing to disclose. MHM has nothing to disclose. LEH has nothing to disclose.

  • Provenance and peer review Not commissioned; externally peer reviewed.