Personalized medicine, digital technology and trust: a Kantian account
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SCIENTIFIC CONTRIBUTION
Personalized medicine, digital technology and trust: a Kantian account Bjørn K. Myskja1 · Kristin S. Steinsbekk2 Accepted: 27 August 2020 © The Author(s) 2020
Abstract Trust relations in the health services have changed from asymmetrical paternalism to symmetrical autonomy-based participation, according to a common account. The promises of personalized medicine emphasizing empowerment of the individual through active participation in managing her health, disease and well-being, is characteristic of symmetrical trust. In the influential Kantian account of autonomy, active participation in management of own health is not only an opportunity, but an obligation. Personalized medicine is made possible by the digitalization of medicine with an ensuing increased tailoring of diagnostics, treatment and prevention to the individual. The ideal is to increase wellness by minimizing the layer of interpretation and translation between relevant health information and the patient or user. Arguably, this opens for a new level of autonomy through increased participation in treatment and prevention, and by that, increased empowerment of the individual. However, the empirical realities reveal a more complicated landscape disturbed by information ‘noise’ and involving a number of complementary areas of expertise and technologies, hiding the source and logic of data interpretation. This has lead to calls for a return to a mild form of paternalism, allowing expertise coaching of patients and even withholding information, with patients escaping responsibility through blind or lazy trust. This is morally unacceptable, according to Kant’s ideal of enlightenment, as we have a duty to take responsibility by trusting others reflexively, even as patients. Realizing the promises of personalized medicine requires a system of institutional controls of information and diagnostics, accessible for non-specialists, supported by medical expertise that can function as the accountable gate-keeper taking moral responsibility required for an active, reflexive trust. Keywords Genomics · Precision medicine · Reflexive trust · Autonomy · Empowerment
Introduction Tomorrow’s personalized medicine (PM) is characterized by the turn towards digital technologies expressed in the possibility of producing a vast amount of data points, the increased access to such data points, increased potential of interpretation based on these and increased reliability of findings with an ensuing increased tailoring of diagnostics, treatment and prevention (e.g. Flores et al. 2013; Steinhubl 2019; Abe 2016; Mahoney and Asch 2019; NHS 2018).
* Bjørn K. Myskja [email protected] 1
Department of Philosophy and Religious Studies, Norwegian University of Science and Technology – NTNU, Trondheim, Norway
Department of Biomedical Laboratory Science, Norwegian University of Science and Technology – NTNU, Trondheim, Norway
2
The vision is to increase precision and minimize the layer of interpretation and translation between relevant health informati
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