How and why to use 'vulnerability': an interdisciplinary analysis of disease risk, indeterminacy and normality.

In recent years, 'vulnerability' has been getting more traction in theoretical, professional and popular spaces as an alternative or complement to the concept of risk. As a group of science and technology studies scholars with different disciplinary orientations yet a shared concern with biomedicine, self and society, we investigate how vulnerability has become a salient and even dominant idiom for discussing disease and disease risk. We argue that this is at least partly due to an inherent indeterminacy in what 'vulnerability' means and does, both within and across different discourses. Through a review of feminist and disability theory, and a discussion of how vulnerability and disease both get recruited into a binary conceptualisation of normal versus abnormal, we argue that vulnerability's indeterminacy is, in fact, its strength, and that it should be used differently than risk. Using COVID-19 management in the UK as an illustration of the current ambivalence and ambiguity in how vulnerability versus risk is applied, we suggest that instead of being codified or quantified, as it has started to be in some biomedical and public health applications, vulnerability and its remedies should be determined in conjunction with affected communities and in ways that are polyvalent, flexible and nuanced. The concept of vulnerability encapsulates an important precept: we must recognise inequality as undesirable while not attempting to 'solve' it in deterministic ways. Rather than becoming fixed into labels, unidirectional causalities or top-down universalising metrics, vulnerability could be used to insist on relational, context-specific understandings of disease and disease risk-in line with contemporary social justice movements that require non-hierarchical and non-universal approaches to problems and solutions.

The Promissory Visions of DIYbio: Reimaging Science from the Fringe.

Recent years have seen a proliferation of do-it-yourself biology (DIYbio) initiatives, consisting of people undertaking a range of bioscience activities outside traditional research environments. DIYbio initiatives, while diverse, exist at the fringes of institutionalised science, which enables them to advance different promissory visions about what science, especially bioscience, could or should become in the future, including how it should be governed. These visions reconfigure conventional delineations of science in politically and normatively loaded ways that can simultaneously reaffirm, contest, and shift the traditional epistemic foundations of science. They put forth alternative science futures in ways that highlight the performative force of promissory visions in shaping not only mainstream but also fringe science activity. DIYbio offers a fruitful lens for understanding how science is currently being reconfigured by unconventional actors to encompass new meanings and domains. It offers a different angle on the wider sociology of expectations engagement with the future as an analytical object, by showing how the future of science is constructed and managed from the fringe. Yet, DIYbio initiatives' promissory visions are also embedded within neoliberal ideals of productive and entrepreneurial citizens, highlighting how the wider socio-economic context constrains the alternative futures manufactured by these initiatives.

Exploring nurses' online perspectives and social networks during a global pandemic COVID-19.

OBJECTIVES: Examine the online interactions, social networks, and perspectives of nursing actors on COVID-19 from conversations on Twitter to understand how the profession responded to this global pandemic. DESIGN: Mixed methods. SAMPLE: Ten-thousand five-hundred and seventy-four tweets by 2790 individuals and organizations. MEASUREMENTS: NodeXL software was used for social network analysis to produce a network visualization. The betweenness centrality algorithm identified key users who were influential in COVID-19 related conversations on Twitter. Inductive content analysis enabled exploration of tweet content. A communicative figurations framework guided the study. RESULTS: Nursing actors formed different social groupings, and communicated with one another across groups. Tweets covered four themes; (1) outbreak and clinical management of the infectious disease, (2) education and information sharing, (3) social, economic, and political context, and (4) working together and supporting each other. CONCLUSION: In addition to spreading knowledge, nurses tried to reach out through social media to political and healthcare leaders to advocate for improvements needed to address COVID-19. However, they primarily conversed within their own professional community. Action is needed to better understand how social media is and can be used by nurses for health communication, and to improve their preparedness to be influential on social media beyond the nursing community.

What makes AI 'intelligent' and 'caring'? Exploring affect and relationality across three sites of intelligence and care.

This paper scrutinises how AI and robotic technologies are transforming the relationships between people and machines in new affective, embodied and relational ways. Through investigating what it means to exist as human 'in relation' to AI across health and care contexts, we aim to make three main contributions. (1) We start by highlighting the complexities of philosophical issues surrounding the concepts of "artificial intelligence" and "ethical machines." (2) We outline some potential challenges and opportunities that the creation of such technologies may bring in the health and care settings. We focus on AI applications that interface with health and care via examples where AI is explicitly designed as an 'augmenting' technology that can overcome human bodily and cognitive as well as socio-economic constraints. We focus on three dimensions of 'intelligence' - physical, interpretive, and emotional - using the examples of robotic surgery, digital pathology, and robot caregivers, respectively. Through investigating these areas, we interrogate the social context and implications of human-technology interaction in the interrelational sphere of care practice. (3) We argue, in conclusion, that there is a need for an interdisciplinary mode of theorising 'intelligence' as relational and affective in ways that can accommodate the fragmentation of both conceptual and material boundaries between human and AI, and human and machine. Our aim in investigating these sociological, philosophical and ethical questions is primarily to explore the relationship between affect, relationality and 'intelligence,' the intersection and integration of 'human' and 'artificial' intelligence, through an examination of how AI is used across different dimensions of intelligence. This allows us to scrutinise how 'intelligence' is ultimately conveyed, understood and (technologically or algorithmically) configured in practice through emerging relationships that go beyond the conceptual divisions between humans and machines, and humans vis-à-vis artificial intelligence-based technologies.

Towards a feminist philosophy of engagements in health-related research.

Engagement with publics, patients, and stakeholders is an important part of the health research environment today,and different modalities of 'engaged' health research have proliferated in recent years. Yet, th ere is no consensus on what, exactly, 'engaging' means, what it should look like, and what the aims, justifications, or motivations for it should be. In this paper, we set out what we see as important, outstanding challenges around the practice and theory of engaging and consider the tensions and possibilities that the diverse landscape of engaging evokes. We examine the roots, present modalities and institutional frameworks that have been erected around engaging, including how they shape and delimit how engagements are framed, enacted, and justified. We inspect the related issue of knowledge production within and through engagements, addressing whether engagements can, or should, be framed as knowledge producing activities. We then unpack the question of how engagements are or could be valued and evaluated, emphasising the plural ways in which 'value' can be conceptualised and generated. We conclude by calling for a philosophy of engagements that can capture the diversity of related practices, concepts and justifications around engagements, and account for the plurality of knowledges and value that engagements engender, while remaining flexible and attentive to the structural conditions under which engagements occur. Such philosophy should be a feminist one, informed by feminist epistemological and methodological approaches to equitable modes of research participation, knowledge production, and valuing. Especially, translating feminist tools of reflexivity and positionalityinto the sphere of engagements can enable a synergy of empirical, epistemic and normative considerations in developing accounts of engaging in both theory and praxis. Modestly, here, we hope to carve out the starting points for this work.

Public involvement in the governance of population-level biomedical research: unresolved questions and future directions.

Population-level biomedical research offers new opportunities to improve population health, but also raises new challenges to traditional systems of research governance and ethical oversight. Partly in response to these challenges, various models of public involvement in research are being introduced. Yet, the ways in which public involvement should meet governance challenges are not well understood. We conducted a qualitative study with 36 experts and stakeholders using the World Café method to identify key governance challenges and explore how public involvement can meet these challenges. This brief report discusses four cross-cutting themes from the study: the need to move beyond individual consent; issues in benefit and data sharing; the challenge of delineating and understanding publics; and the goal of clarifying justifications for public involvement. The report aims to provide a starting point for making sense of the relationship between public involvement and the governance of population-level biomedical research, showing connections, potential solutions and issues arising at their intersection. We suggest that, in population-level biomedical research, there is a pressing need for a shift away from conventional governance frameworks focused on the individual and towards a focus on collectives, as well as to foreground ethical issues around social justice and develop ways to address cultural diversity, value pluralism and competing stakeholder interests. There are many unresolved questions around how this shift could be realised, but these unresolved questions should form the basis for developing justificatory accounts and frameworks for suitable collective models of public involvement in population-level biomedical research governance.

Credibility Contests: Media Debates on Do-It-Yourself Coronavirus Responses and the Role of Citizens in Health Crises.

During the early months of the COVID-19 pandemic in Europe and North America, news outlets ran a series of stories reporting on "do-it-yourself" (DIY) coronavirus responses that were created and implemented by citizens. This news discourse exemplifies and can illuminate wider shifts in the roles of citizens in science, as individuals outside professional science institutions are becoming more actively involved in scientific knowledge production than before, while the epistemic authority of professional "expert" scientists has been increasingly contested. This paper focuses on DIY citizenship, taking news discourses on citizens' DIY coronavirus responses as a lens to explore wider questions around the changing ways in which the roles of different public health actors are delineated and represented under conditions of significant social and epistemic uncertainty. We aim to shed new light on the nature of-and the role of the news media in mediating-the credibility contests and boundary work that is currently at play around DIY citizenship. We do so by focusing on four discourses: polarized discourses around DIY face masks and hand sanitisers; delineation of credible from incredible interventions and actors around DIY coronavirus treatments and tests; delineation of professional science from "fringe" citizen science; and discourses declaring that "we're all in this together." We conclude that making sense of these discourses requires a thorough appreciation of the context in which they emerged. Our analysis reveals how emancipatory accounts of DIY citizenship can mask structural inequalities underlying who can and is expected to "do-it-themselves," and how.

Marketing Experimental Stem Cell Therapies in the UK: Biomedical Lifestyle Products and the Promise of Regenerative Medicine in the Digital Era.

Stem cell research has attracted much public and biomedical anticipation centred on the possibility of using stem cells to treat various diseases and conditions, but the number of evidence-based therapies is currently limited. Numerous commercial direct-to-consumer (DTC) businesses are nonetheless marketing experimental stem cell therapies online for myriad medical conditions and aesthetic ailments, which has attracted critique due to safety and efficacy concerns. Existing research has largely focused on the problem of unproven therapies and regulatory pathways for addressing it. The proliferation of these experimental products must also be examined, however, in the broader socio-technological context of consumer culture and changing practices of knowledge-making in the digital era. DTC stem cell therapies have emerged as a new biomedical 'lifestyle' product that blurs the boundaries between 'science,' 'medicine,' and 'consumer culture.' In using, conceptualising and marketing stem cells, commercial businesses build on and commercially co-opt alternative epistemic and ontological frames that challenge scientific medicine. They advance promissory narratives about their potential that tap on cultural aspirations around the future of medicine and health. This is key, not only for understanding how and why these therapies have proliferated but also in conceptualising what the 'problem' around them actually is.

Contested futures: envisioning "Personalized," "Stratified," and "Precision" medicine.

In recent years, discourses around "personalized," "stratified," and "precision" medicine have proliferated. These concepts broadly refer to the translational potential carried by new data-intensive biomedical research modes. Each describes expectations about the future of medicine and healthcare that data-intensive innovation promises to bring forth. The definitions and uses of the concepts are, however, plural, contested and characterized by diverse ideas about the kinds of futures that are desired and desirable. In this paper, we unpack key disputes around the "personalized," "stratified," and "precision" terms, and map the epistemic, political and economic contexts that structure them as well as the different roles attributed to patients and citizens in competing future imaginaries. We show the ethical and value baggage embedded within the promises that are manufactured through terminological choices and argue that the context and future-oriented nature of these choices helps to understanding how data-intensive biomedical innovations are made socially meaningful.

Patienthood and participation in the digital era.

The 'digital era' of informatics and knowledge integration has changed the roles and experiences of patients, research participants and health consumers. No longer figured (merely) as passive recipients of healthcare services or as beneficiaries of top-down biomedical information, individuals are increasingly seen as active contributors in healthcare and research. They are positioned into multiple roles that are experienced simultaneously by those who access and co-produce digital content that can easily be transformed into data. This is contextualised by 'big data' technologies that have altered biomedicine, enabling collation and analysis of myriad data from digitised records to personal mobile data. Social media facilitate new formations of communities and knowledge enacted online, while novel kinds of commercial value emerge from digital networks that enable health data commodification. In this paper, we draw from exemplary digital era shifts towards participatory medicine to cast light on the rapprochements between patienthood, participation and consumption, and we explore how these rapprochements are mediated by, and materialise through, the use of participatory digital technologies and big data. We argue that there is a need to use new conceptual tools that account for the multiple roles and experiences of patient-participant-consumers that co-emerge through digital technologies. We must also ethically re-assess the rights and responsibilities of individuals in the digital era, and the implications of digital era changes for the future of biomedicine and healthcare.