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Ethical concerns around privacy and data security in AI health monitoring for Parkinson’s disease: insights from patients, family members, and healthcare professionals

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Abstract

Artificial intelligence (AI) technologies in medicine are gradually changing biomedical research and patient care. High expectations and promises from novel AI applications aiming to positively impact society raise new ethical considerations for patients and caregivers who use these technologies. Based on a qualitative content analysis of semi-structured interviews and focus groups with healthcare professionals (HCPs), patients, and family members of patients with Parkinson’s Disease (PD), the present study investigates participant views on the comparative benefits and problems of using human versus AI predictive computer vision health monitoring, as well as participants’ ethical concerns regarding these technologies. Participants presumed that AI monitoring would enhance information sharing and treatment, but voiced concerns about data ownership, data protection, commercialization of patient data, and privacy at home. They highlighted that privacy issues at home and data security issues are often linked and should be investigated together. Findings may help technologists, HCPs, and policymakers determine how to incorporate stakeholders’ intersecting but divergent concerns into developing and implementing AI PD monitoring tools.

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Notes

  1. The CAMERA study took place before the technology was introduced into patients’ homes. However, participants were invited to engage during the development stage in a healthcare setting where the system was being tested.

  2. We use the following abbreviations: ‘P’: patient (e.g., P01); 'HCP': healthcare professional (e.g., HCP01); and ‘FM’: family member (e.g., FM01).

  3. Both HCPs and patients shared similar excitement about the potential benefits of the new technology. These excitements include the belief that the system will provide better and more accurate data to neurologists, leading to better intervention and treatment decisions. Healthcare professionals were more specific regarding the potential benefits, highlighting behaviours and patterns the technology is likely to identify, for example, mood, cognition, motor symptoms, mobility, gait, freezing, and involuntary movement (dyskinesia).

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Authors and Affiliations

  1. The Maurice Young Centre for Applied Ethics, School of Population and Public Health, The University of British Columbia, Vancouver, BC, Canada

    Itai Bavli & Anita Ho

  2. School of Public Health, Boston University, Boston, MA, USA

    Itai Bavli

  3. Bioethics Program, University of California, San Francisco, CA, USA

    Anita Ho

  4. Pacific Parkinson’s Research Centre, The University of British Columbia, Vancouver, BC, Canada

    Ravneet Mahal & Martin J. McKeown

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  1. Itai Bavli
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Bavli, I., Ho, A., Mahal, R. et al. Ethical concerns around privacy and data security in AI health monitoring for Parkinson’s disease: insights from patients, family members, and healthcare professionals. AI & Soc (2024). https://doi.org/10.1007/s00146-023-01843-6

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