Personalized medicine, digital technology and trust: a Kantian account

• Published in: Medicine, health care, and philosophy health care, and philosophy, 2020-12, Vol.23 (4), p.577-587
• Main Authors: Myskja, Bjørn K., Steinsbekk, Kristin S.
• Format: Article
• Language: English
• Subjects: Digital Technology - organization & administration; Digital Technology - standards; Education; Empowerment; Ethics; Genetic Techniques; Humans; Medical Law; Paternalism; Patient Participation - psychology; Personal Autonomy; Philosophy; Philosophy of Biology; Philosophy of Medicine; Precision medicine; Precision Medicine - psychology; Scientific Contribution; Theory of Medicine/Bioethics; Trust; Well being
• ISSN: 1386-7423; 1572-8633
• DOI: 10.1007/s11019-020-09974-z

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.