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The ethical challenges of personalized digital health

Maeckelberghe, Els; Zdunek, Kinga; Marceglia, Sara; Farsides, Bobbie; Rigby, Michael

Authors

Els Maeckelberghe

Kinga Zdunek

Sara Marceglia

Bobbie Farsides

Michael Rigby



Abstract

Personalized digital health systems (pHealth) bring together in sharp juxtaposition very different yet hopefully complementary moral principles in the shared objectives of optimizing health care and the health status of individual citizens while maximizing the application of robust clinical evidence through harnessing powerful and often complex modern data-handling technologies. Principles brought together include respecting the confidentiality of the patient–clinician relationship, the need for controlled information sharing in teamwork and shared care, benefitting from healthcare knowledge obtained from real-world population-level outcomes, and the recognition of different cultures and care settings. This paper outlines the clinical process as enhanced through digital health, reports on the examination of the new issues raised by the computerization of health data, outlines initiatives and policies to balance the harnessing of innovation with control of adverse effects, and emphasizes the importance of the context of use and citizen and user acceptance. The importance of addressing ethical issues throughout the life cycle of design, provision, and use of a pHealth system is explained, and a variety of situation-relevant frameworks are presented to enable a philosophy of responsible innovation, matching the best use of enabling technology with the creation of a culture and context of trustworthiness.

Citation

Maeckelberghe, E., Zdunek, K., Marceglia, S., Farsides, B., & Rigby, M. (in press). The ethical challenges of personalized digital health. Frontiers in Medicine, 10, https://doi.org/10.3389/fmed.2023.1123863

Journal Article Type Article
Acceptance Date May 9, 2023
Online Publication Date Jun 19, 2023
Deposit Date Jan 12, 2024
Journal Frontiers in Medicine
Publisher Frontiers Media
Peer Reviewed Peer Reviewed
Volume 10
DOI https://doi.org/10.3389/fmed.2023.1123863
Keywords General Medicine