Empowering precision medicine. An exploration

The transition to preventive medicine based on precision data raises several interesting philosophical and ethical questions. First, there is the question of the implications for responsibility. Preventive medicine has the potential to transform the concept of 'being a patient': as more and more risk factors are discovered in genomic and other data, more and more people gain actionable information about their health status. They all become potential patients. This transformation has relevance for how we conceive of responsibility for health. To which extent does more information also imply more individual responsibility for health? To which extent is there a collective responsibility to enable people to take care of their health? Can nudging techniques be employed? Is preventive medicine an individual or collective endeavour? Second, this ties in into the question of the value-ladenness of concepts of health and disease. Existing discussions of personalized medicine often take for granted that the question of what is 'good' or 'healthy' is fixed. Hence, 'personalized' refers to how health can be achieved but does not investigate how the meaning of 'health' is also linked to personal choices and contexts. If the aim of preventive medicine is to allow as many people to live good lives, it may need to include personal choices and contexts into the equation. Third, such a truly personalized approach may help the empowerment of patients. On the one hand, understanding and taking action on one's own health risks may empower people to take up responsibility for their own wellbeing. On the other hand, some people will not take up specific recommendations or consider the idea of preventive medicine an infringement of their autonomy. In this exploratory project, we will make an inventory of existing thoughts and opinions on responsibility, concepts of health and disease and empowerment in the context of precision medicine. This will be done through a study of the existing literature, but also in close engagement with the WeAre-partnership – composed of VITO, Vlaams Patiëntenplatform, Domus Medica, Zorgnet-Icuro and the Koning Boudewijnstichting – which is actively involved in building up an innovation ecosystem for personalized and preventive healthcare solutions, and by means of interviews with relevant stakeholders.

Keywords:BIO-ETHICS

Disciplines:Bioethics