Self-Knowledge and Risk in Stratified Medicine

Abstract

This article considers why and how self-knowledge is important to communication about risk and behaviour change by arguing for four claims. First, it is doubtful that genetic knowledge should properly be called 'self-knowledge' when its ordinary effects on self-motivation and behaviour change seem so slight. Second, temptations towards a reductionist, fatalist, construal of persons' futures through a 'molecular optic' should be resisted. Third, any plausible effort to change people's behaviour must engage with cultural selfknowledge, values and beliefs, catalysed by the communication of genetic risk. For example, while a Judaeo-Christian notion of self-knowledge is distinctively theological, people's self-knowledge is plural in its insight and sources. Fourth, self-knowledge is found in compassionate, if tense, communion which yields freedom from determinism even amidst suffering. Stratified medicine thus offers a newly precise kind of humanising health care through societal solidarity with the riskiest. However, stratification may also mean that molecularly unstratified, 'B' patients' experience involves accentuated suffering and disappointment, a concern requiring further research.keywords self-knowledge, risk communication, values, behaviour change, compassion, stratified medicine This paper considers why and how self-knowledge is important to the communication of risk. In an illuminating lecture at the launch of the University of Oxford's Centre for

Mind the gap? The platform trial as a working environment

“…Here we approach the findings from a different angle, that of compassion and care, which raises questions about the ethos of platform protocols. Previous work has paid attention to the interrelation between compassion and risk in the ethos of stratified medicine in general, with a particular focus on the interrelation between patients and clinicians [9], and caring for colleagues and teams working in healthcare more generally [10]. Here, the more delimited focus is on the context of a trials unit as a context for compassion and care.…”

“…This work stems from the interest of three of the authors (LM, JH and TSM) in the societal significance of the precision medicine paradigm [7, 8] working with a diverse group encompassing clinicians, psychologists, patient advocates, health economists, ethicists and theologians. We have applied the broad perspective of that group in considering the implications here, drawing on a project of the Oxford Healthcare Values Partnership entitled Compassion in healthcare: practical policy for civic life , which considered not only the role of compassion in relationships between clinicians and patients [9] but also the care offered to colleagues and teams working in healthcare [10].…”

The “Molecularly Unstratified” Patient: A Focus for Moral, Psycho-Social and Societal Research

“…First, recalling the complexly interdependent commercial, academic and state actors involved in PPM, we emphasise critical awareness and realism ‘about the sources of innovation, other-regard and selfishness.’ These reflective attitudes are vital to fostering ‘a research environment which serves the public interest’ and identifying temptations that tend towards neglect of that interest. In our view, such ‘temptations to neglect largescale public benefit may overwhelm even the best motivated private actors.’ From a patient and clinician perspective we analysed ‘the clinician’s mediating role amidst the factors which shape patient experience’ with a view to ‘ensuring that population-level public health approaches are not forgotten in the search for ever more precise approaches to prevention.’ [2, 3, 7, 9, 12, 14, 19]…”

“…This implies research into how healthcare professionals might be better trained to pay attention to the interaction of the communication of genomic information with the values and beliefs of patients, especially as regards their future happiness; and how the entire enterprise of personalised medicine might develop a wiser compassion for the patients as persons whom they seek to serve. [2, 7, 9,12]…”

“…For example, patients’ cultural forms of selfknowledge and understandings of the future are bound up in complex ways with questions of theology and religion. [7, 8]…”