Abstract
As precision and personalized medicine prove their worth, care shifts more towards treating representations of patients rather than patients’ persons and bodies. Something is gained and something is lost by virtualizing patients and mediating care through technology. Because benefits are clear, the chapter highlights ethical, legal, and social issues surrounding quality of care, privacy, bias, and fairness to consider what could be lost.
I argue that virtualization reduces distinctions between individuals and reduces knowledge of each patient and patient’s body. That changes relationships between patients and clinicians and shifts the locus of care away from the patient. It also decontextualizes data on which treatment and algorithmic recommendations are based. The data and algorithms all lack transparency, yet their predictions influence care. Not only can care be compromised, but both patients’ and clinicians’ personhood and autonomy are threatened.
Privacy, too, is endangered by the push to generate, collect, and aggregate data as all data become health data, used repeatedly and combined into multiple datasets. It is impossible to predict what those datasets will be, how data will be used, and what they will yield. Anonymity and consent both lose meaning. Privacy concerns can undermine confidentiality, which, in turn, can undermine trust, and therefore, can compromise care.
Algorithmic predictions based on sorting patients into algorithmically derived groups can harm group members. Care influenced by algorithmic recommendations may not be appropriate for all patients in the group, and predictions may stem from, or result in, bias, stigmatization, negative profiling, or disparate services.
The chapter concludes with a framework for analyzing ethical, legal, and social issues. It expands the scope of bioethics to more generally include information technologies in healthcare. To realize the promise of personalized medicine in ethical ways, individuals and their bodies should be central and personalization personal.
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Notes
- 1.
Some use the terms “precision medicine” and “personalized medicine” interchangeably. Others may differentiate them, so that precision medicine is taken to focus on genomics or molecular bases of disease. Personalized medicine combines this with digital health, with its focus on data generated by patients’ devices, together with more traditional sources of patient information. I generally use the terms interchangeably.
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Kaplan, B. (2022). Ethical, Legal, and Social Issues Pertaining to Virtual and Digital Representations of Patients. In: Hsueh, PY.S., Wetter, T., Zhu, X. (eds) Personal Health Informatics. Cognitive Informatics in Biomedicine and Healthcare. Springer, Cham. https://doi.org/10.1007/978-3-031-07696-1_23
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