Personalized medicine, digital technology and trust: a Kantian account

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.

Complexity and intention to use an innovative device for post-infarction patients: rehabilitation nurses' perspectives

“…The development of medical devices for the rehabilitation of bedridden patients, including programs for CR, will naturally follow future trends in this field: virtual reality, gaming, mHealth, and telemedicine / telenursing. As stated by Myskja & Steinsbekk (2020), tomorrow's personalized medicine implies a significant effort to promote patient autonomy through empowerment interventions.…”

'You have to put a lot of trust in me': autonomy, trust, and trustworthiness in the context of mobile apps for mental health

“…Autonomy, trust, and trustworthiness are closely interlinked in bioethical debates. Several authors have examined the extent to which autonomy, trust, and trustworthiness are interrelated, especially regarding healthcare (O'Neill 2002;Oshana 2014;Nys 2015;Steinfath and Wiesemann 2016;McLeod and Ryman 2020;Myskja and Steinsbekk 2020). The discourse no longer only focuses on human individuals but integrates non-human systems such as robots or avatars and cooperation between humans and these systems (Noorman and Johnson 2014;Alaieri and Vellino 2016;de Visser et al 2018).…”

Knowledge gaps, attitudes, and practices regarding end-of-life medical care among physicians in an academic medical center

“…Likewise, medical employees also require additional training on communicating end-of-life options with the patients [6,8,9]. Furthermore, in the era of personalized medicine, the care provider-patient relationship has changed from medical paternalism to an autonomy-based relationship, in which patient participation in decision-making is an obligation rather than an opportunity [10]. Unfortunately, such a providerpatient relationship is rarely established with the patient or patient's surrogate in Arabian countries.…”