FROM CONSENT TO CHOICE: THE ETHICS OF EMPOWERMENT-BASED REFORMS

The aim of my thesis is twofold. First, I focus on the controversies arising from the renegotiations of patienthood and citizenship entailed in what I call ‘empowerment-based reforms’ (EBRs). What I define as EBRs will have in fact different implications for the various stakeholders involved in their development and implementation. Empowered citizens within EBRs will have access to (and will be required to manage) an unprecedented amount of information regarding their health conditions. Factors such as genetic and biological makeup, life-style behaviours and environmental exposures will be increasingly used (by both citizens and professionals) to identify treatment options, to target developing diseases, and to adopt preventive measures for future illnesses. Among the effects that this personalising vision of healthcare is likely to foster, it is thus worth emphasizing how the nature and scope of individual responsibility for health will be affected by this paradigm shift, and how this future scenario can be made an ethically desirable one. In my thesis, I therefore identify the range of normative exercises entailed in EBRs, and I present a normative analysis of empowerment aiming at highlighting the distinctive ethical aspects of this approach. Second, the goal of my thesis is to explore how the normative theorization of empowerment proposed above can accommodate one of the most pressing societal implications of epigenomics. Namely, its burdening of individual responsibility for health. On the one hand, I argue that novel approaches to prevention, diagnosis and treatment brought about by epigenomics are a fundamental tenet of the personalization project at the basis of what I call EBRs. In this respect, epigenome-based healthcare is thus likely to foster controversies similar to other epistemic endeavours of personalized medicine (e.g. genomics, metabolomics, pharmacogenomics), which can be addressed from the normative premises of empowerment. On the other, I maintain that concerns arising from the translation of epigenomics into healthcare practice should be poised with its promise to make increasingly visible the ‘contextual nature’ of health (i.e. tracing the mechanistic interaction between lifestyle, living conditions and individual health). Rather than limiting societal appraisal of epigenomics to the danger of burdening individual responsibility for health, I argue that epigenetic knowledge may become pivotal in fleshing out social and environmental influences inherently affecting individual health. Sufficiently valid, reliable and actionable epigenetic knowledge may in fact orient individual choice across the spectrum of environmental and lifestyle exposures determining health, thus championing epigenomics with the potential of serving the empowering aims fleshed out throughout this work. The road connecting the constitution of an empowered citizenship in healthcare, and the societal appraisal of epigenomics can be regarded as a two-way road. There is in fact a possibility that empowerment and epigenomics may respectively shape their normative and epistemic dimensions in the future of healthcare. It is thus towards the identification of the possible challenges and opportunities that this synergy may bring about that the theoretical attention of this work is devoted.