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.
The COVID-19 pandemic highlighted global interdependencies, accompanied by widespread calls for worldwide cooperation against a virus that knows no borders, but responses were led largely separately ...by national governments. In this tension between aspiration and reality, people began to grapple with how their own lives were affected by the global nature of the pandemic. In this article, based on 493 qualitative interviews conducted between 2020 and 2021, we explore how people in Argentina, Austria, Bolivia, Ecuador, Ireland, Italy and Mexico experienced, coped with and navigated the global nature of the pandemic. In dialogue with debates about the parameters of the 'global' in global health, we focus on what we call people's everyday (de)bordering practices to examine how they negotiated (dis)connections between 'us' and 'them' during the pandemic. Our interviewees' reactions moved from national containment to an increasing focus on people's unequal socio-spatial situatedness. Eventually, they began to (de)border their lives beyond national lines of division and to describe a new normal: a growing awareness of global connectedness and a desire for global citizenship. This newfound sense of global interrelatedness could signal support for and encourage transnational political action in times of crises.
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IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK
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.
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CMK, NUK, ODKLJ, UL, UM, UPUK
The sudden and dramatic advent of the COVID-19 pandemic led to urgent demands for timely, relevant, yet rigorous research. This paper discusses the origin, design, and execution of the SolPan ...research commons, a large-scale, international, comparative, qualitative research project that sought to respond to the need for knowledge among researchers and policymakers in times of crisis. The form of organization as a research commons is characterized by an underlying solidaristic attitude of its members and its intrinsic organizational features in which research data and knowledge in the study is shared and jointly owned. As such, the project is peer-governed, rooted in (idealist) social values of academia, and aims at providing tools and benefits for its members. In this paper, we discuss challenges and solutions for qualitative studies that seek to operate as research commons.
•Research commons are a practicable way to make timely, relevant, and rigorous research in times of crisis.•Principles of research commons include peer governance and provisioning rather than production.•Research commons perceive research as an act of solidarity.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
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.
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IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK
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.
While everyone has been impacted directly or indirectly by the COVID-19 pandemic and the measures to contain it, not everyone has been impacted in the same way and certainly not to the same degree. ...Media coverage in early 2020 emphasized the “unprecedented” nature of the pandemic, and some even predicted that the virus could be a global “equalizer.” Ensuing debates over how the pandemic should be handled have often hinged on oppositions between protecting health and healthcare systems versus saving livelihoods and the economy, a dichotomy that we argue is false. Drawing on 482 interviews conducted in Germany, Italy, Ireland, Austria, German-speaking Switzerland and the UK over two points in a 6-month period as part of the ‘Solidarity in times of Pandemics Research Consortium’ (SolPan), we illustrate the ways that oppositions posed between saving lives or saving livelihoods fail to capture the entangled, long-standing nature of structural inequalities that have been revealed through the pandemic. Health- and wealth-related inequalities intersect to produce the “second pandemic,” a term used by a research participant to explain the other forms of devastation that run in parallel with virus. Our findings thus complicate such dichotomies through a qualitative understanding of the pandemic as a lived experience. The pandemic emerges as a critical juncture which, in exacerbating these existing structural inequalities, also poses an opportunity to work to better resolve them.
•The pandemic is a critical juncture for addressing existing structural inequalities.•The COVID-19 pandemic has exacerbated socio-economic disparities and created new ones.•Health- and wealth-related inequalities intersect to produce the “second pandemic”.•Dichotomies between “life” and “economy” are complicated by the lived experience of the pandemic.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
This paper explores the complementary and contrasting uses of the terms ‘personalized medicine’ and ‘precision medicine’ in denotations of a biomedical approach attentive to individual specificities ...that harnesses genomics and other data-intensive profiling technologies. Drawing on qualitative interviews conducted with biomedical experts in the context of the Precision Medicine Initiative in the United States and the 100,000 Genomes project in the United Kingdom, we read definitional reflection and debate through the lens of the sociologies of expectations and novelty. We observed two key aspects in the shift from ‘personalized medicine’ to ‘precision medicine’ that has been especially prevalent in the United States. First, the term ‘precision medicine’ enables its proponents to rhetorically depart from the idea that this approach to medicine can be expected to deliver
individually
personalized treatments—an expectation that is seen as unrealistic by many. Second, it enables its proponents to assert that personalization, when understood as caring about the patient as an individual person, is not a new approach to medicine but rather something that many medical professionals have always aimed to do (eliding in the process other experiences of US healthcare as, for instance, alienating and discriminatory). We argue that the shift from ‘personalized’ to ‘precision’ medicine can be regarded as a manifestation of performative nominalism: an attribution of ‘newness’ that contributes to performing and propelling innovation, rather than solely reflecting it. In so doing, rhetorical demarcations between personalized and precision medicine emerge as performatively contributing to the production of different biomedical ontologies.
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EMUNI, FIS, FZAB, GEOZS, GIS, IJS, IMTLJ, KILJ, KISLJ, MFDPS, NLZOH, NUK, OBVAL, OILJ, PNG, SAZU, SBCE, SBJE, SBMB, SBNM, UKNU, UL, UM, UPUK, VKSCE, ZAGLJ
The promotion of health literacy was a key public health strategy during the COVID-19 pandemic. However, the role of social networks and relationships for support with health literacy-related tasks ...in the context of the COVID-19 pandemic is scarcely understood. Moving beyond traditional notions of health literacy, which focus on individual skills and knowledge, this study uses the concept of distributed health literacy to explore how individuals make meaning of and respond to health literacy and make their literacy skills available to others through their relational and socially situated and lived experiences of the COVID-19 pandemic. Drawing on 89 semi-structured interviews conducted in three European countries (Italy, Portugal, and Switzerland) between October and December 2021, we found narratives of stabilization, hybridization, and disruption that show how health literacy concerning COVID-19 is a complex social construct intertwined with emotional, cognitive, and behavioral responses distributed among individuals, communities, and institutions within socioeconomic and political contexts that affect their existence. This paper opens new empirical directions to understand the critical engagement of individuals and communities toward health information aimed at making sense of a complex and prolonged situation of uncertainty in a pandemic.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
Mobile applications for digital contact tracing have been developed and introduced around the world in response to the COVID-19 pandemic. Proposed as a tool to support 'traditional' forms of ...contact-tracing carried out to monitor contagion, these apps have triggered an intense debate with respect to their legal and ethical permissibility, social desirability and general feasibility. Based on a large-scale study including qualitative data from 349 interviews conducted in nine European countries (Austria, Belgium, France, Germany, Ireland, Italy, the Netherlands, German-speaking Switzerland, the United Kingdom), this paper shows that the binary framing often found in surveys and polls, which contrasts privacy concerns with the usefulness of these interventions for public health, does not capture the depth, breadth, and nuances of people's positions towards COVID-19 contact-tracing apps. The paper provides a detailed account of how people arrive at certain normative positions by analysing the argumentative patterns, tropes and (moral) repertoires underpinning people's perspectives on digital contact-tracing. Specifically, we identified a spectrum comprising five normative positions towards the use of COVID-19 contact-tracing apps: opposition, scepticism of feasibility, pondered deliberation, resignation, and support. We describe these stances and analyse the diversity of assumptions and values that underlie the normative orientations of our interviewees. We conclude by arguing that policy attempts to develop and implement these and other digital responses to the pandemic should move beyond the reiteration of binary framings, and instead cater to the variety of values, concerns and expectations that citizens voice in discussions about these types of public health interventions.
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DOBA, IJS, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
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