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This thesis analyzes precision medicine from an ethical and political perspective, especially in terms of distributive justice: it is aimed at investigating the kinds of benefits that can be produced after precision medicine, and the possible distributions of those benefits, by considering the consequent impact of precision medicine on social and health equity. Precision medicine is considered as a social construct subjected to different interpretations, and it is analyzed by mainly referring to two major case studies: the Precision Medicine Initiative in the US, and the 100,000 Genomes Project in the UK. The analysis focuses on the promises of precision medicine, as expressed in the discourses of the two projects, compared with the expectations and the concerns, as expressed in published comments and in fieldwork interviews with relevant stakeholders. The analysis investigated the scope of precision medicine with respect to public health, the inclusiveness of precision medicine, and the democratizing capacities. It emerged that there are different versions of precision medicine, which encompass different scopes and possibly produce different kinds of benefits. In particular, one version, by also including in its scope the social determinants of health, is argued to have the ?societal potential? to inform socio-political interventions to promote social equity and, in return, health equity. It is argued that, although the benefits directly deriving from precision medicine - tailored biomedical treatments and information supposed to empower individuals - risk to totally exclude socio-economically disadvantaged groups, thus preventing any solidarity-based participation, on the other hand, the implementation of the ?social potential? would foster the public good and a solidarity-based medicine, to the advantage of everybody. Some challenges for the actualization of this ?societal potential? are identified and discussed. The aim of this thesis is to contribute to overcoming those challenges by promoting the dialogue and the alignment between medical innovation and socio-political reforms.

This conceptual chapter evokes Albert Hirschman’s classic distinction between “exit” and “voice” to ascertain the potential for individuals to voice their concerns in the context of sharing data for genetics and personalized precision medicine initiatives. It elaborates the emerging framework of participatory medicine as a form of “invited activism” and goes on to discuss the essential role of activism by considering the strategies implemented by institutions to trigger voice when it is not initiated spontaneously. On the one hand, we diagnose a generalized failure of concerned actors to voice spontaneously around voluntary data sharing for future-oriented medical research. On the other hand, we scrutinize patient and public involvement practices made available by precision medicine initiatives as institutional attempts to increase voice and therefore as “invited activism.” We finally interrogate the limits of voice in this invited format in the context of genomics initiatives., This is a draft of a chapter that has been accepted for publication by Oxford University Press in the forthcoming book Healthcare Activism: Markets, Morals and the Collective Good, edited by Susi Geiger and published in Sept. 2021. Please quote this paper as follows: Galasso, Ilaria and Susi Geiger (2021): Preventing "Exit", Eliciting "Voice": Patient, Participant and Public Involvement as Invited Activism in Precision Medicine and Genomics Initiatives. In S. Geiger (ed.): Healthcare Activism: Markets, Morals and the Collective Good. Oxford University Press.