This paper problematizes the precision medicine approach embraced by the All of Us Research Program (US) and by Genomics England (UK) in terms of benefits distribution, by arguing that current “diversity and inclusion” efforts do not prevent exclusiveness, unless the framing and scope of the projects are revisited in public health terms. Grounded on document analysis and fieldwork interviews, this paper analyzes efforts to address potential patterns of exclusion upstream (from participating in precision medicine research) and downstream (from benefitting from (...) precision medicine outputs). It argues that efforts for inclusion upstream are not corresponded downstream, and this unbalance jeopardizes the equitable capacities of the projects. It concludes that enhanced focus on socio-environmental determinants of health and aligned public health interventions as precision medicine outputs would be to the benefit of all and especially of those who are most at risk of (upstream as well as downstream) exclusion. (shrink)

This paper draws on the ethics of care to investigate how citizens grappled with ethical tensions in the mundane practice of grocery shopping at the height of the Covid-19 pandemic. We use this case to address the broader question of what it means ‘to care’ in the context of a crisis. Based on a qualitative longitudinal cross-country interview study, we find that the pandemic transformed ordinary shopping spaces into places fraught with a sense of fear and vulnerability. Being forced to (...) face one’s own vulnerability created an opportunity for individuals to relate to one another as significant others through a sense of “response-ability”, or the capacity of people to respond to ethical demands through situated ethical reasoning. We argue for a practical ethos of care in which seemingly small decisions such as how often to go shopping and how much to buy of a particular product serve as a means to relate to both specified and generalized others—and through this, ‘care with’ society. Our study contributes to displacing the continuing prevalence of an abstract and prescriptive morality in consumption ethics with a situated and affective politics of care. This vocabulary seems better suited to reflect on the myriad of small and unheroic care acts in times of crisis and beyond. (shrink)

This paper problematises the notions of public or common good as weighed against individual sovereignty in the context of medical research by focusing on genetic research. We propose the notion of collective good as the good of the particular collective in which the research was conducted. We conducted documentary and interview-based research with participant representatives and research leaders concerned with participant involvement in leading genetic research projects and around two recent genetic data controversies: the case of the UK Wellcome Sanger (...) Institute, accused of planning unauthorised commercialisation of African DNA samples, and the case of the company Genuity Science, which planned genetic research on brain tumour samples in Ireland with no explicit patient consent. We advocate for greater specificity in circumscribing the collective to which genetic research relates and for greater efforts in including representatives of this collective as research coleaders in order to enable a more inclusive framing of the good arising from such research. Such community-based participant cogovernance and coleadership in genetic research is vital especially when minorities or vulnerable groups are involved, and it centrally requires community capacity building to help collectives articulate their own notions of the collective good. (shrink)

School closure is one of the most debated measures undertaken to contain the spread of the Coronavirus disease (COVID-19) pandemic. The pandemic has devastating health and socio-economic effects and must be contained, but schools play a vital role in present and future well-being, capabilities and health of children. We examine the detrimental consequences of both the closure and reopening of schools, by focusing on inequalities in the challenges affecting children and their families. This paper is grounded on Irish and Italian (...) data from a multi-national longitudinal qualitative interview study. Research participants articulated a variety of issues and challenges that highlight inequalities in access to education during school closures, in the supportiveness of home setting, and in school preparedness to reopen, often mirroring or exacerbating pre-existing inequalities. The reported unequal lived experiences indicate that some harms are actionable, and already suggest some potential harm mitigation strategies. We conclude by advocating for enhanced public consultation to help mitigate the consequences of public dilemmas in general, and to help detect and tackle inadequacies and inequalities for school children through and beyond the pandemic, by learning from the experience of the concerned actors. (shrink)