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 \u2018empowerment-based reforms\u2019 (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 \u2018contextual nature\u2019 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

Corrigendum: Translating planetary health principles into sustainable primary care services.

[This corrects the article DOI: 10.3389/fpubh.2022.931212.]

The International Human Epigenome Consortium: A Blueprint for Scientific Collaboration and Discovery

The International Human Epigenome Consortium (IHEC) coordinates the generation of a catalog of high-resolution reference epigenomes of major primary human cell types. The studies now presented (see the Cell Press IHEC web portal at http://www.cell.com/consortium/IHEC) highlight the coordinated achievements of IHEC teams to gather and interpret comprehensive epigenomic datasets to gain insights in the epigenetic control of cell states relevant for human health and disease

Challenging the Idea of Corporate Responsibility : Physician's Obligation to Disclose Information

"Impairing loyalty: corporate responsibility for clinical misadventure" interestingly addresses a new ethical requirement for the doctor/patient relationship, by adding a third party involvement (biomedical companies) in the assessment of moral responsibility. However, the author does not provide, in our opinion, sufficiently strong arguments for new moral obligations toward the patient. Our aim is to present each of the following elements: first, we will provide a possible defence of the moral wrongness of Dr. Baker\u2019s professional acts, deriving from a different Beauchamp & Childress\u2019 principle (i.e. not grounding it on a violation of the principle of beneficence, as the author does, but on an infringement of the respect for autonomy); second, we will challenge the concept of agency/partnership providing an argument about the different moral weight of actions in Mrs Robbins\u2019 case (i.e. addressing the ultimate responsibility to the professional virtue of fidelity). Finally, we\u2019ll discuss some undesirable consequences (the obstruction of scientific knowledge application from the bench to the bedside) that could originate from the relationship between society and science defended by the autho

Questioni etiche dei test genetici : tra privacy e diritto di non sapere

I risultati della ricerca biomedica stanno cambiando radicalmente il volto diagnostico e terapeutico della medicina, ma stanno anche aprendo nuove questioni etiche sulle quali il cittadino deve essere informato per poter partecipare in modo consapevole alle decisioni che lo riguardano. L'utilizzo di staminali embrionali umane, la sperimentazione su animali, le prospettive della biologia sintetica, l'istituzione di biobanche, gli studi clinici su soggetti umani, le nuove frontiere della ricerca e i rischi di una nuova eugenetica, la sperimentazione di terapie cellulari, ma anche gli aspetti pi\uf9 critici delle campagne di prevenzione e del prolungamento della durata della vita umana sono tutti temi che aprono la porta a interrogativi etici nuovi o che gettano una luce diversa su problemi che da sempre si pongono alla riflessione morale

The epigenomic self in personalized medicine : between responsibility and empowerment

This paper focuses on two areas of innovation currently articulating the agenda of personalized medicine (PM): the discourse of empowerment in health-care reforms and the rise of molecular epigenomics. We align these two developments as discursive and technical resources, focusing on their nascent interplay in shaping alternative sociotechnical imaginaries of PM. Our work aims at inaugurating an intellectual programme on the distinct futures of policy- and identity-making that are being catalysed around epigenomic technoscience, as well as to provide an operational map of its potential synergies with pre-existing socio-political discourses of empowerment in PM. This roadmap advances our understanding of how the intersection of epigenomics with dominant policy discourses becomes a resource to shape roles and obligations of citizens, patients and health-care actors in the emergence of PM

La promozione della salute pubblica : fra paternalismo e responsabilità

I risultati della ricerca biomedica stanno cambiando radicalmente il volto diagnostico e terapeutico della medicina, ma stanno anche aprendo nuove questioni etiche sulle quali il cittadino deve essere informato per poter partecipare in modo consapevole alle decisioni che lo riguardano. L'utilizzo di staminali embrionali umane, la sperimentazione su animali, le prospettive della biologia sintetica, l'istituzione di biobanche, gli studi clinici su soggetti umani, le nuove frontiere della ricerca e i rischi di una nuova eugenetica, la sperimentazione di terapie cellulari, ma anche gli aspetti pi\uf9 critici delle campagne di prevenzione e del prolungamento della durata della vita umana sono tutti temi che aprono la porta a interrogativi etici nuovi o che gettano una luce diversa su problemi che da sempre si pongono alla riflessione morale