Introduction

There has been much excitement, and much concern, around the idea of tailoring healthcare delivery more closely to individual characteristics of patients. Different terms have been used to capture this idea. In the United Kingdom, the term ‘stratified medicine’ refers to the clustering together of patients according to specific characteristics that determine preventive or treatment trajectories. These characteristics can be very broad, such as gender, or very specific, such as the sharing of a genetic marker that influences drug response (MRC 2015). Policy-makers and scholars in the United States often use the term ‘precision medicine’ to refer to the stratification of patients according to more and more specific criteria into ever more fine-grained groups (NAS 2011). Pan-European initiatives such as the European Science Foundation's ‘Forward Look on Personalised Medicine for the European Citizen’ (ESF 2013) have, despite the problematic connotations of this term, continued to use the term ‘personalised medicine’ because of the higher level of recognition it has had, compared to other terms that were more common in specific regions or nations within Europe (such as ‘individualised medicine’ in Germany; see Grabe et al. 2014).

In the remainder of this chapter, we will use the term personalisation to refer to this overall idea (and under ‘personalised medicine’ we will also subsume personalised healthcare). But regardless of the specific terms used, all these labels refer to the idea that the ‘one size fits all’ mode in prevention, diagnosis and treatment should be replaced by a more tailored approach. An important enabler for the rising popularity of the notion of personalised medicine had been the Human Genome Project. Throughout the 1990s, the Human Genome Project had been accompanied by hopes that the ability to read the human genetic ‘code’ – at the time frequently referred to as ‘The Book of Life’ – would enable us to understand and eventually cure a wide range of diseases (Holdrege and Wirz 2001; Kay 2000). As is well known, the Human Genome Project has not delivered on this particular promise. It has, however, generated important insights into DNA-based human variation. After the official end of the Human Genome Project in the early 2000s, there was a growing sense of urgency for this knowledge – which had been obtained with the help of considerable public and private funds – to deliver clinical benefits.