Perspectives of Youths on the Ethical Use of Artificial Intelligence in Health Care Research and Clinical Care

Author:

Thai Kelly12,Tsiandoulas Kate H.1,Stephenson Elizabeth A.34,Menna-Dack Dolly5,Zlotnik Shaul Randi14,Anderson James A.16,Shinewald Alexis R.7,Ampofo Augustina7,McCradden Melissa D.128

Affiliation:

1. Department of Bioethics, The Hospital for Sick Children, Toronto, Ontario, Canada

2. Genetics & Genome Biology, Peter Gilgan Centre for Research & Learning, Toronto, Ontario, Canada

3. Labatt Family Heart Centre, The Hospital for Sick Children, Toronto, Ontario, Canada

4. Department of Paediatrics, University of Toronto, Toronto, Ontario, Canada

5. Holland Bloorview Kids Rehabilitation Hospital, Toronto, Ontario, Canada

6. Institute for Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada

7. The Hospital for Sick Children, Toronto, Ontario, Canada

8. Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada

Abstract

ImportanceUnderstanding the views and values of patients is of substantial importance to developing the ethical parameters of artificial intelligence (AI) use in medicine. Thus far, there is limited study on the views of children and youths. Their perspectives contribute meaningfully to the integration of AI in medicine.ObjectiveTo explore the moral attitudes and views of children and youths regarding research and clinical care involving health AI at the point of care.Design, Setting, and ParticipantsThis qualitative study recruited participants younger than 18 years during a 1-year period (October 2021 to March 2022) at a large urban pediatric hospital. A total of 44 individuals who were receiving or had previously received care at a hospital or rehabilitation clinic contacted the research team, but 15 were found to be ineligible. Of the 29 who consented to participate, 1 was lost to follow-up, resulting in 28 participants who completed the interview.ExposuresParticipants were interviewed using vignettes on 3 main themes: (1) health data research, (2) clinical AI trials, and (3) clinical use of AI.Main Outcomes and MeasuresThematic description of values surrounding health data research, interventional AI research, and clinical use of AI.ResultsThe 28 participants included 6 children (ages, 10-12 years) and 22 youths (ages, 13-17 years) (16 female, 10 male, and 3 trans/nonbinary/gender diverse). Mean (SD) age was 15 (2) years. Participants were highly engaged and quite knowledgeable about AI. They expressed a positive view of research intended to help others and had strong feelings about the uses of their health data for AI. Participants expressed appreciation for the vulnerability of potential participants in interventional AI trials and reinforced the importance of respect for their preferences regardless of their decisional capacity. A strong theme for the prospective use of clinical AI was the desire to maintain bedside interaction between the patient and their physician.Conclusions and RelevanceIn this study, children and youths reported generally positive views of AI, expressing strong interest and advocacy for their involvement in AI research and inclusion of their voices for shared decision-making with AI in clinical care. These findings suggest the need for more engagement of children and youths in health care AI research and integration.

Publisher

American Medical Association (AMA)

Subject

General Medicine

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