We bring together recent discussions on data capitalism and biocapitalization by studying value flows in consumer genomics firms—an industry at the intersection between health care and technology realms. Consumer genomics companies market genomic testing services to consumers as a source of fun, altruism, belonging and knowledge. But by maintaining a multisided or platform business model, these firms also engage in digital capitalism, creating financial profit from data brokerage. This is a precarious balance to strike: If these companies’ business models consist (...) of assetizing the pool of genomic data that they assemble, then part of their work has to revolve around obscuring to consumers any uncertainties that would potentially impinge on these processes of assemblage. We reflect on the nature of these practices and the market relationships that enable them, and we relate this reflection to debates around alternative market arrangements that would potentially mitigate the extractive tendencies of these and other digital health firms. (shrink)

This article outlines and compares current and proposed global institutional mechanisms to increase equitable access to COVID-19 vaccines, focusing on their institutional and operational complementarities and overlaps. It specifically considers the World Health Organization's (WHO’s) COVAX (COVID-19 Vaccines Global Access) model as part of the Access to COVID-19 Tools Accelerator (ACT-A) initiative, the WHO’s COVID-19 Technology Access Pool (C-TAP) initiative, the proposed TRIPS (Trade-Related Aspects of Intellectual Property Agreement) intellectual property waiver and other proposed WHO and World Trade Organization technology (...) transfer proposals. We argue that while various individual mechanisms each have their specific individual merits—and in some cases weaknesses—overall, many of these current and proposed mechanisms could be highly complementary if used together to deliver equitable global access to vaccines. Nonetheless, we also argue that there are risks posed by the proliferation of proposals in this context, including the potential to disperse stakeholder attention or to delay decisive action. Therefore, we argue that there is now a clear need for concerted global multilateral action to recognise the complementarities of specific models and to provide a pathway for collaboration in attaining global equitable access to vaccines. The institutional infrastructure or proposals to achieve this amply exist at this point in time—but much greater cooperation from industry and clear, decisive and coordinated action from states and international organisations are urgently needed. (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)

The aim of the SI is to bring to the fore the places in which cross-sector partnerships (CSPs) are formed; how place shapes the dynamics of CSPs, and how CSPs shape the specific settings in which they develop. The papers demonstrate that partnerships and place are intrinsically reciprocal: the morality and materiality inherent in places repeatedly reset the reference points for partners, trigger epiphanies, shift identities, and redistribute capacities to act. Place thus becomes generative of partnerships in the most profound (...) sense: by developing an awareness of their emplacement, CSPs commit to place, and through their place-based commitments produce three intertwined modalities of place-specific ethics that bind CSPs and place: ethic of recognition, an ethic of care, and an ethic of resilience. Our authors have found vivid examples of how emplaced CSPs embody these ethics, signaling hope for the sustainability of our (always hyper-local) life-worlds. (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)

How does a social enterprise pursue its ethical mandate of social impact growth while navigating the perils of the most vulnerable stage in a venture’s life—scaling up? We observe a small inclusivity social enterprise attempting to scale up rapidly to create equality for people with disabilities throughout the world. Our embedded, ethnographic study is terminated with the venture’s unfortunate demise after their dramatic effort to scale up failed. By examining scaling decision-making and conflicts around creation reasoning longitudinally, our study identifies (...) over-use of effectual logic—a creation reasoning type considered more ethical and more appropriate for high-innovativeness contexts than causal logic—as a major factor in the venture’s failure. From this insight, we extend the parameters of effectuation theory to scaling up and dimensionalize its ethical implications. Guidance for social entrepreneurs to scale up successfully while maintaining ethical integrity is also provided. (shrink)