Citizens in Search for a Place in the Digital Health Data Space: A Case Study.

BACKGROUND: Digital health solutions have been omnipresent in policy agendas. However, we still need to better understand how citizens experience these developments and, more specifically, how citizens would ideally want such solutions to look like. OBJECTIVE: We explore the needs and concerns citizens expressed in different phases of the co-creation process for a prototype of a citizen-centred health data platform within a large-scale European project: Smart4Health. METHOD: We follow a qualitative approach in our analysis of 9 discussion groups in addition to a diverse set of 49 qualitative interviews with citizens and health care professionals. RESULTS: We show how citizens identify the positive potential of health data infrastructures and how they relate digital health to wider developments in contemporary societies. We then outline citizens' concerns that potentially prevent them from becoming users and thus destabilize the policy vision of digital health. CONCLUSION: Four preconditions need to be met for citizens to find their place within a digital health data environment: transparency/trust, infrastructural literacy, digital justice, and a careful consideration of the distribution of responsibilities.

RESPONSE_ABILITY A Card-Based Engagement Method to Support Researchers' Ability to Respond to Integrity Issues.

Issues related to research integrity receive increasing attention in policy discourse and beyond with most universities having introduced by now courses addressing issues of good scientific practice. While communicating expectations and regulations related to good scientific practice is essential, criticism has been raised that integrity courses do not sufficiently address discipline and career-stage specific dimensions, and often do not open up spaces for in-depth engagement. In this article, we present the card-based engagement method RESPONSE_ABILITY, which aims at supporting researchers in developing their ability to respond to challenges of good scientific practice. The method acknowledges that what counts and what does not count as acceptable practice may not be as clear-cut as imagined and that research environments matter when it comes to integrity issues. Using four sets of cards as stimulus material, participants are invited to reflect individually and collectively about questions of research integrity from different perspectives. This approach is meant to train them to negotiate in which contexts certain practices can still be regarded as acceptable and where possible transgressions might begin. RESPONSE_ABILITY can be seen as fostering the creation of an integrity culture as it invites a more reflexive engagement with ideals and realities of good practice and opens a space to address underlying value conflicts researchers may be confronted with. Concluding the article, we call for caution that addressing issues of integrity meaningfully requires striking a delicate balance between raising researchers' awareness of individual responsibilities and creating institutional environments that allow them to be response-able.

"I am Primarily Paid for Publishing ": The Narrative Framing of Societal Responsibilities in Academic Life Science Research.

Building on group discussions and interviews with life science researchers in Austria, this paper analyses the narratives that researchers use in describing what they feel responsible for, with a particular focus on how they perceive the societal responsibilities of their research. Our analysis shows that the core narratives used by the life scientists participating in this study continue to be informed by the linear model of innovation. This makes it challenging for more complex innovation models [such as responsible research and innovation (RRI)] to gain ground in how researchers make sense of and conduct their research. Furthermore, the paper shows that the life scientists were not easily able to imagine specific practices that would address broader societal concerns and thus found it hard to integrate the latter into their core responsibilities. Linked to this, researchers saw institutional reward structures (e.g. evaluations, contractual commitments) as strongly focused on scientific excellence ("I am primarily paid for publishing…"). Thus, they saw reward structures as competing with-rather than incentivising-broader notions of societal responsibility. This narrative framing of societal responsibilities is indicative of a structural marginalisation of responsibility practices and explains the claim, made by many researchers in our sample, that they cannot afford to spend time on such practices. The paper thus concludes that the core ideas of RRI stand in tension with predominant narrative and institutional infrastructures that researchers draw on to attribute meaning to their research practices. This suggests that scientific institutions (like universities, professional communities or funding institutions) still have a core role to play in providing new and context-specific narratives as well as new forms of valuing responsibility practices.

Embracing the "Atomic Future" in Post-World War II Austria.

Mentioning nuclear energy and Austria simultaneously usually alludes to the rejection of nuclear power as a hallmark of Austria's technopolitical identity. This quasi-mythical anti-nuclear positioning came at the price of wiping out the memory of nuclear optimism following WWII until the 1970s. Reconstructing Austria's pro-nuclear phase, we investigate the construction of the institutional infrastructure of pro-nuclearity and the embrace of the "atomic age" as part of a progress-oriented reimagining of the Austrian nation; we show how the nuclear was appropriated; and we elaborate on the creation of a robust sociotechnical imaginary of a trajectory linking Austria's technoscientific past to a bright nuclear future. This allows us to understand how the political and the nuclear were entangled, to grasp the difference in what it takes to create a pro- or anti-nuclear position, and to see how building this sociotechnical imaginary needed specific assemblages of institutional actors, technical elements, values, and futures.

Reordering the "World of Things": The Sociotechnical Imaginary of RFID Tagging and New Geographies of Responsibility.

The aim of this study is to investigate radio frequency identification (RFID) tagging as a form of sociotechnical experimentation and the kinds of sociotechnical futures at stake in this experimentation. For this purpose, a detailed analysis of a publicly available promotional video by a tag producer for the fashion industry, a sector widely using RFID tags, was analysed in detail. The results of the study indicated that the sociotechnical imaginary of RFID tagging gravitates around the core value of perfect sociotechnical efficiency. This demands a high degree of readiness to engage in standardization efforts, which performs a specific materialized understanding of ethics by other means. Furthermore, the analysis points to the importance of considering the spatiotemporal dimensions in which RFID tags work when reflecting on how this technology matters to society. Finally, the analysis shows a tacit effort to keep RFID technology and thus any questions of responsible innovation confined to the shop floor. However, given the spreading of the use of RFIDs, much wider-ranging considerations are called for.

How differences matter: tracing diversity practices in obesity treatment and health promotion.

Diversity has become a buzzword in medical care, denoting a re-evaluation of what it means to attend to differences among human bodies and lives. Questions about what types of differences matter and how they should be defined have become important normative and analytical challenges. Drawing on two case studies, we show how differences between patients and patient-collectives are not simply waiting to be recognised and addressed but also enacted within situated healthcare practices. Although concerns with diversity are present in both cases, they take different forms. In a Viennese health-promotion project for obese clients, care practices are both based on and reproduce large-scale categories that divide the population into distinct subgroups with specific needs. Conversely, in an outpatient clinic for bariatric surgery patients, a technical fix-oriented procedure leads to concerns over diversity becoming an add-on realised by tending to each patient's idiosyncrasies and personal stories. By tracing the practices of diversity and the tensions they produce, we show how classifications and understandings of human difference are based on infrastructures that enable and constrain them. Furthermore, we discuss how they become consequential in healthcare, thereby indicating the importance of remaining reflexive about the political implications of diversity discourse and practice.

Unsustainable Growth, Hyper-Competition, and Worth in Life Science Research: Narrowing Evaluative Repertoires in Doctoral and Postdoctoral Scientists' Work and Lives.

There is a crisis of valuation practices in the current academic life sciences, triggered by unsustainable growth and "hyper-competition." Quantitative metrics in evaluating researchers are seen as replacing deeper considerations of the quality and novelty of work, as well as substantive care for the societal implications of research. Junior researchers are frequently mentioned as those most strongly affected by these dynamics. However, their own perceptions of these issues are much less frequently considered. This paper aims at contributing to a better understanding of the interplay between how research is valued and how young researchers learn to live, work and produce knowledge within academia. We thus analyze how PhD students and postdocs in the Austrian life sciences ascribe worth to people, objects and practices as they talk about their own present and future lives in research. We draw on literature from the field of valuation studies and its interest in how actors refer to different forms of valuation to account for their actions. We explore how young researchers are socialized into different valuation practices in different stages of their growing into science. Introducing the concept of "regimes of valuation" we show that PhD students relate to a wider evaluative repertoire while postdocs base their decisions on one dominant regime of valuing research. In conclusion, we discuss the implications of these findings for the epistemic and social development of the life sciences, and for other scientific fields.

Caring For Evidence: Research and Care in an Obesity Outpatient Clinic.

In recent years, there has been a substantial increase in bariatric surgery rates. This form of obesity treatment is often subjected to the critique that it turns patients into passive objects of medical intervention. Similarly, efforts to 'rationalize' medicine, as in evidence-based medicine, are sometimes denounced for imposing a 'one-size-fits-all' approach that neglects patient diversity. We argue that these critiques fail to do justice to the complexities of actual care situations. In our ethnographic study of a project for bariatric pre- and aftercare, we show how research protocols not only close down but also open up spaces for patient-centered care. Despite professional cautions, experiences of stigma and broader imaginations of biomedical care often lead patients to embrace surgery as a treatment conceptualized as a technological fix. We argue that investigations of how research and clinical practice intertwine need to be both empirically grounded and sensitive to wider societal contexts.

Timescapes of obesity: coming to terms with a complex socio-medical phenomenon.

Obesity is generally considered to be a growing global health problem that results from changes in the way we live in late modern societies. In this article, we argue that investigating the complexities of contemporary timescapes (i.e. the entanglement of physical, culturally framed and personally experienced times) is of key importance for understanding how 'the obesity phenomenon' is conceptualised, performed and acted upon. Analysing both focus groups and print-media articles, we identified three major groups of temporal narratives that shape our perception of obesity: trajectories, temporalities and timing. Each group of narratives follows a different logic and performs a specific kind of ordering work: ontological work that defines what obesity 'really is', diagnostic work that assesses the state of contemporary society and moral work that assigns responsibility to act. We show how the narratives are assembled into distinct timescapes that distribute agency in specific ways. Combining data from both focus groups and media articles allows us to analyse how these two discursive arenas are intertwined, as it makes visible how stories travel and converge, but also diverge in quite important ways. This highlights the importance of a multi-arena approach to fully understand the tensions between different framings of health-related issues. The article argues that the difficulties of controlling body weight are closely entangled with a perceived lack of control over time on both collective and individual levels. In conclusion, we suggest time-sensitive approaches for the analysis of health phenomena and the development of corresponding policy measures.

Refusing the information paradigm: informed consent, medical research, and patient participation.

This article challenges the assumption that patient autonomy can best be assured by providing proper information through formalized procedures such as informed consent. We suggest that to understand and consider laypeople's ways of knowing and decision making, one has to move beyond the information paradigm and take into account a much broader context. Concretely, we investigate informed consent in connection with donating skin tissue remaining from medically indicated surgery. We use interviews with patients and observation protocols to analyse patients' perceptions and ways of making sense of informed consent beyond its bioethical ideal. Patients situate themselves in a larger system of solidarity, enroll in an overall positive image of science as a linear process of innovation oriented towards output, and simultaneously take a pragmatic stance towards hospital routines as a necessary passage point towards receiving good treatment. Because informed consent is one of the central articulations between the biomedical system and society, we conclude by reflecting on the consequences of our findings on a socio-political level.

Visions and versions of governing biomedicine: narratives on power structures, decision-making and public participation in the field of biomedical technology in the Austrian context.

In recent years, governance and public participation have developed into key notions within both policy discourse and academic analysis. While there is much discussion on developing new modes of governance and public participation, little empirical attention is paid to the public's perception of models, possibilities and limits of participation and governance. Building on focus group data collected in Austria within the framework of a European project, this paper explores lay people's visions and versions of government, governance and participation for two biomedical technologies: post-natal genetic testing and organ transplantation. Building on this analysis, we show that people situate their assessments of public participation against the background of rather complex lay models of the governance and government of the respective technology. Because these models are very different for the two technologies, participation also had very different connotations, which were deeply intertwined with each socio-technical system. Building on these findings we argue for a more technology-sensitive approach to public participation.