Precision Medicine: Personalization, Privacy, and the Public Good

The starting point for this intervention is the simple observation that, in precision medicine, the precision with which we can treat any one person depends upon the quantity, quality and variety of information we can obtain from a great number other people.  Foregrounding the relationship between an individual and the other members of the population of which they are a part invites us to consider what normative significance this might have: what might it mean we have reason to expect of others and what might they expect of us in return?

The convergence of different sources of data, bodies of knowledge, professional cultures, social roles and institutions on which precision medicine depends gives rise to hybrid phenomena (the ‘research patient’, the ‘learning health system’, the electronic health record) with potentially ambiguous relationships with unclear boundaries. 

Three issues are highlighted:

• the nature of the public interest in precision medicine and ensuring the fair distribution of benefits
• the privacy of individuals and the implications of individual choice in precision medicine initiatives
• personalisation of care and the implications for individual responsibility and social solidarity

The intervention will draw on reports of the UK’s Nuffield Council on Bioethics, including Medical Profiling and Online Medicine (2010) and The Collection Linking and Use of Data in Biological Research and Health Care (2015), which recommends a deliberative participatory governance approach to precision medicine initiatives.