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.
Highlights
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).The vision is to increase precision and minimize the layer of interpretation and translation between relevant health information and the patient or user
This opens the space for a new level of autonomy within medicine and health care, characterized by increased participation in treatment and prevention, and increased empowerment of the individual. This is in keeping with the Kantian ideal of autonomy as expressed in his influential account of enlightenment, with reduced expert power and reduced paternalism of the kind associated with the traditional doctor-patient relationship
The field itself has problematized the ideals of empowerment, replacing the ‘personalized’ with ‘precision’ or ‘stratified’ and downplaying the empowerment rhetoric. With this comes a reintroduction of the paternalist ideal and a focus on individuals’ responsibilities toward their social subgroups (Juengst et al 2016). We argue that this rhetorical shift away from ‘personalized’ and ‘empowerment’ is expressive of a problematic weakening of patient autonomy that undermines the moral responsibilities of patients as well as of health workers
Summary
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). We use a Kantian approach because this is arguably the most influential account of autonomy as the core value in ethics, and trust and trustworthiness is at the core of Kantian moral philosophy His discussion is highly relevant for the contemporary challenges concerning the relationship between medical expertise and patients. As Kant says, this is only possible if there are guardians that enable this empowerment by making relevant information available, and guaranteeing its relevance for the reflexive engagement This account fits well with the anti-paternalistic autonomy turn in health care, though a further turn towards PM raises new problems of complexity, interpretation and expertise. Increased reliability is obviously good, but hidden interpretations and blurred accountability are not This gives the individual patient or healthy user more autonomy, on condition that she develops higher personal competence in the relevant fields. If the patient fails in her duty of enlightenment and asks the health personnel to take charge of the situation, analyze the data and decide on a course of action, this is still closer to empowerment than a lazy trust in a paternalist expert
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