The ethical challenges of personalized digital health

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

doi:10.3389/fmed.2023.1123863

The ethical challenges of personalized digital health

Front Med (Lausanne). 2023 Jun 19:10:1123863. doi: 10.3389/fmed.2023.1123863. eCollection 2023.

Authors

Els Maeckelberghe¹, Kinga Zdunek², Sara Marceglia³, Bobbie Farsides⁴, Michael Rigby⁵

Affiliations

¹ Beatrix Children's Hospital, University Medical Center Groningen, University of Groningen, Groningen, Netherlands.
² Health Education Unit, Medical University of Lublin, Lublin, Poland.
³ Faculty of Clinical Engineering, University of Trieste, Trieste, Italy.
⁴ Brighton and Sussex Medical School, University of Sussex, Brighton, United Kingdom.
⁵ School of Social, Political and Global Studies and School of Primary, Community and Social Care, Keele University, Keele, United Kingdom.

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.

Keywords: connectivity; consent; ethics; evaluation; evidence; personalized health; policy; trust.