The meaning and enactment of openness in Personalised and Precision Medicine

Abstract

Abstract Along with the proliferation of digital technologies and the datafication of wider areas of people’s bodies and lives, the meaning of Personalised Medicine has shifted. In contemporary Personalised and ‘Precision’ Medicine, openness typically features in terms of calls for data sharing to ensure the availability of the very data sets required for the personalisation of diagnosis, treatment, and prevention. But there are other, more fundamental ways of considering openness in the context of Personalised and Precision Medicine that set different goals for public policy: (1) in an ontological sense, pertaining to the openness of the category of the ‘person’ in Personalised and Precision Medicine; (2) in a pluralistic sense, regarding the plurality of personal and societal perspectives and values in healthcare; and (3) in an emancipatory sense, counteracting concentrations of power around corporate actors—including consumer tech companies—in the health domain. The enhancement of public benefit and social justice and the protection of privacy are key goals for public policy in this context.