ESR 4 – KU Leuven, Belgium

Developing a precision medicine ethics, between personal empowerment and collective responsibility

Host: KU LEUVEN (Leuven University) (BELGIUM)

PhD awarding institution: KU LEUVEN (Leuven University)

Lead Supervisor: K Dierickx

Objectives: Proponents offer four ways in which their approach to medical diagnosis and health care improves upon current practices, arguing that it is more ‘personalised’, ‘predictive’, ‘preventive’ and ‘participatory’ than the medical status quo. This evolution in the direction of PM however implies ethical issues that differ from those in traditional clinical practice and research such as the attempt to control the impact of the ‘data tsunami’, the increase of ‘variants of unknown significance’, the rise of stratified medicine, the tension between individual empowerment on the one hand, and the need of medical expertise and authority on the other hand, the tension between enhancing individual interests and public health interventions for collective benefit. The proposed project will address these ethical challenges and 1) review the scientific literature in order see what the social and ethical ramifications are of the promises of PM; 2) interview key stakeholders (including scientists, translational researchers, clinician researchers, policy makers, funders) in order to clarify and to deal with the moral questions of PM; 3) and develop a PM ethics and recommendations that deal in a proper way with this new evolution. The envisaged qualitative methodology builds on work of Kitzinger (1995) and Hsieh and Shannon (2005) and acquired in-house expertise (Christenhusz et al. 2015; Hens et al. 2016).