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Recommendations for immunisation practices in children with single ventricle CHD are lacking. A survey of 53 heart centres received responses from 40 centres (33 complete and 7 partial) revealing variability in immunisation recommendations. Only 11% have a written protocol. Immunisations were delayed before cardiopulmonary bypass in 94% (32/34) and after cardiopulmonary bypass in 97% (30/31), with 34% (13/38) re-dosing some immunisations post cardiopulmonary bypass. Further research is needed to develop guidelines.
Film offers untapped potential for making critical interventions in world politics, particularly in ways that harness people’s capacity to narrate stories that creatively empower their communities. Combining International Relations scholarship on visual politics with narrative theory and feminist scholarship on care, this paper presents film as a means of exploring and expressing narrative agency; that is, the power to tell stories that represent people’s experiences in ways that disrupt hegemonic narratives. Dialectics of care and narrative agency are explored in the context of military-to-civilian ‘transition’ in Britain. We argue that the landscape of transition for military veterans is dominated by a preoccupation with employment and economic productivity, resulting in a ‘care deficit’ for veterans leaving the military. Through the Stories in Transition project, which used co-created film to explore narrative agency in the context of three veterans’ charities, we argue that the act of making care visible constitutes a necessary intervention in this transitional landscape. Grounding this intervention within feminist care ethics and the related notion of care aesthetics, we highlight the potential for film to reveal in compelling audio-visual narratives an alternative project of transition which might better sustain life and hope in the aftermath of military service.
Scientific and technical expertise, now largely understood as the ultimate source of authoritative knowledge, are vital to how our societies operate. This punchy introduction to thinking about science-society relations draws on research and concepts to argue for the importance of knowing.
The Lyman alpha (Ly$\alpha$) forest in the spectra of $z\gt5$ quasars provides a powerful probe of the late stages of the epoch of reionisation (EoR). With the recent advent of exquisite datasets such as XQR-30, many models have struggled to reproduce the observed large-scale fluctuations in the Ly$\alpha$ opacity. Here we introduce a Bayesian analysis framework that forward-models large-scale lightcones of intergalactic medium (IGM) properties and accounts for unresolved sub-structure in the Ly$\alpha$ opacity by calibrating to higher-resolution hydrodynamic simulations. Our models directly connect physically intuitive galaxy properties with the corresponding IGM evolution, without having to tune ‘effective’ parameters or calibrate out the mean transmission. The forest data, in combination with UV luminosity functions and the CMB optical depth, are able to constrain global IGM properties at percent level precision in our fiducial model. Unlike many other works, we recover the forest observations without invoking a rapid drop in the ionising emissivity from $z\sim7$ to 5.5, which we attribute to our sub-grid model for recombinations. In this fiducial model, reionisation ends at $z=5.44\pm0.02$ and the EoR mid-point is at $z=7.7\pm0.1$. The ionising escape fraction increases towards faint galaxies, showing a mild redshift evolution at fixed UV magnitude, $M_\textrm{UV}$. Half of the ionising photons are provided by galaxies fainter than $M_\textrm{UV} \sim -12$, well below direct detection limits of optical/NIR instruments including $\textit{ JWST}$. We also show results from an alternative galaxy model that does not allow for a redshift evolution in the ionising escape fraction. Despite being decisively disfavoured by the Bayesian evidence, the posterior of this model is in qualitative agreement with that from our fiducial model. We caution, however, that our conclusions regarding the early stages of the EoR and which sources reionised the Universe are more model-dependent.
Objectives/Goals: To investigate interventional clinical trial participation overall and by race, gender, and age. Methods/Study Population: We used Epic Cosmos, an aggregated, de-identified EHR platform including over 270 million patients, to examine overall clinical trial participation and the race, gender, and age composition of participants versus non-participants. Patients ≥5 years old with known race and gender and at least one healthcare encounter between 2021 and 2024 were included. Interventional trial enrollment was identified by a “research flag” indicating current or past participation in an interventional study within an Epic system contributing data to Cosmos. Race was categorized as American Indian, Asian, Black, Native Hawaiian, or White. Age-adjusted relative representation (RR) ratios were used to compare participation, with RR >1 indicating over-representation and RR Results/Anticipated Results: Of 130,455,189 patients meeting eligibility criteria, 0.52% (673,425) of patients were active or inactive in an interventional clinical trial. Results are shown in the figure below. The poorest representation was from Asian and NH/PI persons. Representation was most similar to the patient population for whites and AI/AN persons. Black males participated less and women, more than predicted by patient composition. Older patients participated more frequently than younger (age, mean (SD), y, 53 (22) vs. 46 (23); p Discussion/Significance of Impact: This is the first study we know of describing interventional trial participation in the USA across millions and millions of patients. Further research is needed to clarify whether these differences are due to the nature of the studies themselves (e.g., OB/GYN trials including only women, etc.) versus disparities in recruitment or otherwise.
There is growing interest in lifestyle interventions as stand-alone and add-on therapies in mental health care due to their potential benefits for both physical and mental health outcomes. We evaluated lifestyle interventions focusing on physical activity, diet, and sleep in adults with severe mental illness (SMI) and the evidence for their effectiveness. To this end, we conducted a meta-review and searched major electronic databases for articles published prior to 09/2022 and updated our search in 03/2024. We identified 89 relevant systematic reviews and assessed their quality using the SIGN checklist. Based on the findings of our meta-review and on clinical expertise of the authors, we formulated seven recommendations. In brief, evidence supports the application of lifestyle interventions that combine behavioural change techniques, dietary modification, and physical activity to reduce weight and improve cardiovascular health parameters in adults with SMI. Furthermore, physical activity should be used as an adjunct treatment to improve mental health in adults with SMI, including psychotic symptoms and cognition in adults with schizophrenia or depressive symptoms in adults with major depression. To ameliorate sleep quality, cognitive behavioural informed interventions can be considered. Additionally, we provide an overview of key gaps in the current literature. Future studies should integrate both mental and physical health outcomes to reflect the multi-faceted benefits of lifestyle interventions. Moreover, our meta-review highlighted a relative dearth of evidence relating to interventions in adults with bipolar disorder and to nutritional and sleep interventions. Future research could help establish lifestyle interventions as a core component of mental health care.
Objectives: People with dementia live with unmet needs due to dementia and other conditions. The EMBED-Care Framework is a co-designed app-delivered intervention involving holistic assessment, evidence-based decision- support tools and resources to support its use. Its intention is to empower people with dementia, family and practitioners to assess, monitor and manage needs. We aimed to explore the feasibility and acceptability of the EMBED-Care Framework and develop its underpinning programme theory.
Methods: A six-month single arm mixed-Methods feasibility and process evaluation, underpinned by an initial programme theory which was iteratively developed from previous studies. The settings were two community teams and two long term care facilities (LTCFs). People with dementia and family were recruited to receive the intervention for 12 weeks. Practitioners were recruited to deliver the intervention for six months. Quantitative data included candidate process and outcome measures. Qualitative data comprised interviews, focus groups and observations with people with dementia, family and practitioners. Qualitative and quantitative data were analysed separately and triangulated at the interpretation phase.
Results: Twenty-six people with dementia, 25 family members and 40 practitioners were recruited. Practitioners in both settings recognized the potential benefit for improving care and outcomes for people with dementia, and to themselves in supporting care provision. Family in both settings perceived a role in informing assessment and decisions about care. Family was integral to the intervention in community teams but had limited involvement in LTCFs. In both settings, embedding the intervention into routine care processes was essential to support its use. In community teams, this required aligning app functionality with care processes, establishing processes to monitor alerts, and clarifying team responsibilities. In LTCFs, duplication of care processes and limited time to integrate the intervention into routine care processes, affected its acceptability.
Conclusions: A theoretically informed co-designed digital intervention has potential to improve care processes and outcomes for people with dementia and family, and is acceptable to practitioners in community teams. Further work is required to strengthen the intervention in LTCFs to support integration into care processes and support family involvement. The programme theory detailing key mechanisms and likely outcomes of the EMBED-Care Framework is presented.
Reports that say that something hasn't happened are always interesting to me, because as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns – the ones we don't know we don't know.
Donald Rumsfeld, then US Secretary of Defence, in 2002
Rumsfeld's comments – which came in the middle of a news briefing regarding the possible presence of weapons of mass destruction in Iraq – were largely treated with derision at the time, even winning a ‘Foot in Mouth’ award from the UK Plain English Campaign for the ‘most baffling comment by a public figure’. The phrasing is, perhaps, tortuous, and the structure confusing. But (remarkably enough) the basic idea that Rumsfeld is trying to convey is an important one, and one that we will explore throughout this chapter. Knowing and not knowing are generally taken to be straightforward, binary categories: we know or do not know a particular fact. But in practice these categories have texture and nuance. As Rumsfeld says, there are different ways of not-knowing, and, as we will see in Chapter 7 in particular, knowledge itself can be fragile and contestable. In this chapter we explore some of this fragility, looking at what happens to technoscientific knowledge in times of disaster or crisis, as well as the ways in which both knowledge and non-knowledge are constructed through the intermingling of scientific, social, and political processes. We therefore examine the kinds of unknowing that Rumsfeld describes. How do we come to know some things, know that we don't know others, and are entirely ignorant of the existence of others again?
Knowing and not knowing
In the decades since Rumsfeld made his comments the field of ignorance studies has emerged. Its basic premise is that ignorance is not simply emptiness or lack, but a rich social space that emerges in particular ways and has particular uses. In scientific research, for instance, we know particular things and not others because of funding and scholarly priorities and interests, all of which operate to focus research on specific areas (we continue to be ignorant of, for instance, many aspects of women's health, because standard scientific models are generally male, or of diseases that dominate the South rather than the rich North).
I am writing from what feels like a time of crisis. As I sit in my office in Vienna the COVID-19 pandemic continues to rage, causing everything from cancelled meetings and online teaching to millions of excess deaths across the world. The climate crisis – the onset of changes in the global climate caused by human activity – is beginning to shape weather patterns and the degree to which particular regions of the world are habitable; each year, we see more extreme weather, alongside disasters such as widespread flooding or wildfires. And there are conflicts and clashes at national borders. Two countries over from where I sit in Austria, Russia has invaded Ukraine, and the country is the site of appalling violence as it fights to maintain its sovereignty. This is, however, just one example of forms of nationalistic aggression that are taking place around the world, from Colombia to Afghanistan, which are causing widespread death, destruction, and displacement. Many predict that such conflicts will only increase as climate change reshapes the world's landscapes.
This is not a book about these crises, or the many others that shape our world. It is, however, a book about one thing that these events have in common. In all of these examples, scientific and technical knowledge and expertise are central to how they are understood, managed, and unfold. While they are not only scientific crises or controversies, science and technology are vital aspects of them. To take some examples: I have just read an expert commentary on the war in Ukraine that uses the results from ‘war games’ to discuss possible outcomes of the current situation. These highly technical processes use modelling to try and understand different conflict scenarios, with the results of such games themselves feeding in to political advice and decision making. I have also just carried out a PCR test for COVID-19, a now regular occurrence to check whether I am infected and whether I can safely meet with others. My results will come back in 24 hours: I have become adept both at carrying out the test and reading the results (I have learned what a ‘CT value’ is, for instance).
The COVID-19 pandemic of the early 2020s marked a significant interruption into normal life for billions of people around the world, and cost millions of lives. Its impacts are still unfolding as I write, and touch everything from national economies to long-term healthcare needs and community cohesion. But the pandemic is also illustrative in multiple ways of the themes discussed in this book. For months and years technoscientific research became highly visible, as governments referred to scientific advice to justify their decisions and as researchers explained their work in the media. As public audiences, we watched ‘science in the making’ – unfinished, uncertain science – as scientists sought to make sense of the situation, offer the best advice possible, and develop vaccines and medical treatments. Given the emphasis on stable and uncontroversial knowledge within much science communication, the pandemic was an almost unprecedented moment in which the uncertain, incremental nature of scientific research became public. At the same time some researchers – like virologist Christian Drosten in Germany or epidemiologist Salim Abdool Karim in South Africa – became household names, shooting to a level of visibility no one would have anticipated.
The story of one such researcher is particularly pertinent to the topics I will discuss in this chapter. Epidemiologist Neil Ferguson was a key figure in the UK government's pandemic response, a modeller whose work helped make the case for stringent lockdowns and physical distancing. But in early May 2020 he abruptly resigned from his government advisory role after newspaper reports that, during a period in which those in separate households were forbidden from intermingling, he had been visited twice by his married lover (or, as one report had it, ‘trysting’). ‘I accept I made an error of judgement and took the wrong course of action’, Professor Ferguson said in a statement. ‘I have therefore stepped back from my involvement in Sage (Scientific Advisory Group for Emergencies).
Why did Ferguson feel the need to resign? Perhaps it's not a question that needs asking – after all, his choice was treated as obvious at the time, with the UK health minister saying that it was the ‘right decision’ and that it was ‘not possible’ for him to continue in his expert advisory role.
R.F. Kuang's 2022 novel Babel is a fantasy, set in a world in which the act of translation between languages can spark magic. But it is also a meticulously researched account of Oxford in the 1830s, a world in which knowledge production is entangled with the maintenance of colonial power. At the novel's centre is the Royal Institute of Translation, housed in a tower in the centre of Oxford – known as ‘Babel’ – that is eight stories high and the tallest structure in the city. The home of the translation work that powers the British Empire, it is a magically protected ‘gleaming white edifice’ accessible only to an elite cohort of scholars. It is the heart of translation scholarship, and thereby – in the logic of the novel – the seat of power that is used to exploit and dominate the world.
Intentionally or not, Kuang's Babel echoes images of academia as an ivory tower, a metaphor used to present universities as cloistered environments that are segregated from the societies in which they sit. As Steven Shapin has charted, the use of this metaphor intensified throughout the 20th century, increasingly becoming attached to research and researchers and being used to critique an attitude of academic detachment. ‘This is no time for any man [sic] to withdraw into some ivory tower’, Shapin quotes US President Roosevelt as saying in 1940, ‘and proclaim the right to hold himself aloof from the problems, yes, and the agonies of his society’. The image of the ivory tower continues to circulate and (Shapin suggests) is now almost entirely framed as negative, capturing the idea that research that is disengaged from society and its needs is morally problematic. In both Babel and wider discourse, ivory towers are dangerous.
To think of the relationship between science and society is, often, to reach for metaphors such as the ivory tower. Such languages are taken-for-granted means of expressing how academic knowledge production relates to wider society, and the assumptions that lie behind them are perhaps too rarely explored. In this chapter I would like to do so, and to situate and explore the things we call ‘science’ and ‘society’.
This chapter is slightly different to those that have preceded it. As I worked on the chapters you have read so far, I increasingly felt that it was important to contextualise the discussions they contain (and the spaces that they describe) through a more explicit engagement with power. Indeed, I came to see this as even more urgent than thinking about technoscience in the context of democracy – the kinds of debates discussed in the preceding chapter. It is certainly important to consider the place of technoscience in democratic societies, and the ways in which it can be subject to deliberation and debate, but at the same time democracy is a slippery concept, and one that looks very different in different contexts. Many countries, spaces, and processes are not committed to the version of democracy that is celebrated in deliberative theory. It is therefore necessary to find ways of critically reflecting on technoscience and its place in collective life that do not simply end at the idea of democratisation. This chapter uses scholarship concerned with power and justice to do this, returning to many of the sites and processes I have discussed so far to consider their intersection with questions of equity – by which I mean questions of fairness and equitable access to the opportunities and benefits of contemporary societies.
Why should we critically interrogate technoscience's entanglements with collective life in this way, and reflect on how it relates to power and structural inequalities? The answer to this question is for me exemplified by a moment at a science communication conference I attended in 2023. Like many other fields, science communication has, over the course of the last years, started to reckon with the ways in which it continues to incorporate institutionalised racism, sexism, and other forms of oppression.
I have already mentioned (in Chapter 5) analyses of science communication that show the ways in which it is organised around Whiteness and middle-class values; other work has sought to explore what it might mean to queer, decolonise, or otherwise diversify science communication practice. Both the urgency and the sensitive nature of these moves became clear at the conference. Science has a history of oppressing Black and queer bodies, one Black participant said. How can it be held accountable for this? Similarly, it has a history of ignoring women's pain, and of framing their bodies as deviations from a male norm. Why should those of us who inhabit bodies subject to such forms of oppression or ignorance trust or celebrate it?
This book is, as I began by saying, a resource. It brings together and connects you to different ideas, scholars, and literatures that have something to say about the relationship between science, technology, and society. My aim was to collate, synthesise, and summarise, doing as much justice as possible to the complexities of the diverse spaces we have encountered while still capturing their range and sweep. I hope that you can use it as a starting point for engaging further with the debates and moments that most interest you.
While I want this book to be a resource, a set of tools for living in technoscientific societies, I have chosen not to give instructions or directions. It contains few practical tips and no lists of how to navigate the contemporary world. The resources I offer are concepts and ideas that help us think about technoscience and society, rather than concrete suggestions as to how to act on them.
In part this is because there are no easy instructions for responding to a view of the world in which technoscience is always social, and society is shaped by technoscience. This view may change our imaginations, the ways in which we think about the role and place of science in society, but given the diversity of the kinds of interactions and mutual shapings that we have encountered it is clear that there can be no single account of how to navigate these. Indeed, many of the spaces and debates I have described demand individual judgements and choices. I cannot tell you how to act in response to arguments for the need to decolonise the university, acknowledge epistemic diversity, properly engage with the emergence of public concerns about technoscience, or view expertise as flexible rather than static (for instance). These discussions require personal responses that may, however, lead to collective action (as in the case of the radical science movement, citizen activism around environmental harm, or efforts to ensure responsible technology development).
At the same time it seems too lazy to leave you without any concluding thoughts or suggestions. I want to offer three ideas that, to me, offer a summary of the resources – the tools to think technoscience in society with – that are outlined in this book.
This chapter is concerned with concrete examples of how the mutual shaping of science, technology, and the social become visible. The ways in which technologies are developed and used is one central instance of this: let's start, then, with three examples of such development.
The first is recent, dating from the time of writing, in 2023. A user on the social media platform Reddit has prompted an artificial intelligence (AI)-based image generator to create a series of selfies of soldiers from throughout history, from Samurai warriors to French soldiers during the First World War. As Jenka Gurfinkel notes in commenting on the images, the result is deeply uncanny for a number of reasons, one of which is the identical way in which each group is depicted as grinning for the camera. Quite aside from the question of whether the battlefield would be a place for smiling selfies, all of the soldiers sport what Gurfinkel describes as the ‘American smile’: the tooth-revealing grin that results when you are asked to say ‘cheese’. These smiles are a result of the training data the AI system was built on, and its reliance on images from the Anglophone internet, where smiling in this way is common. The images are, however, particularly weird if you come from a culture where smiling is done differently, or less frequently. The ways in which emotions are shown are highly specific; to Gurfinkel, as an emigre from Russia to the United States, it grated that all of the different ethnic groups and cultures represented had the same kind of smile. ‘AI dominated by American-influenced image sources’, Gurfinkel writes, ‘is producing a new visual monoculture of facial expressions’. Particular cultural norms – in this case around what smiling should look like and how emotions are expressed – thus come to shape a technology (such as AI image generators), without acknowledgement that local values are being implicitly universalised.
The second example is older, and concerns the way in which particular technologies may be transported and reinterpreted in new locations. Historian Jean Gelman Taylor tells the story of how Singer sewing machines, after initially being developed in the United States in the 1800s, travelled to the ‘Dutch East Indies’ – occupied Indonesia – in the early 20th century.
When I was a teenager in 1990s UK – a period which coincided with the height of public obsession with the TV show Friends – a series of adverts for hair products circulated featuring the Friends actor Jennifer Aniston. Famous for her glossy hair and ‘Rachel cut’, in the ads she talks about falling in love – with a shampoo. The most famous version of the advert doesn't only feature Aniston, however: she breaks off with the immortal words ‘Here comes the science bit – concentrate!’, allowing the ad to segue into an animation representing the shampoo in question's innovative technology and a (male) voiceover that explains this technology. According to the scriptwriters, this allowed them to include the ‘obligatory scientific message’ with humour and a sense of fun.
I have forgotten a lot of things from this period of my life, but – for better or worse – this advert is not one of them. And perhaps it is ripe for re-analysis. There's a lot to reflect on in it: that the ‘science bit’ is framed as comprehensively separate from Aniston; that it is disembodied; that it involves jargon (the product contains Ceramide-R!); that there is the suggestion, through Aniston's winking ‘concentrate!’, that it is boring or at least demanding. The advert is just one example of the ways in which science and technology populate culture, not only through the technologies we use or how we imagine the role of science in society, but in popular media, consumer culture, and entertainment. Technoscience permeates leisure as well as politics.
This chapter explores some of the ways in which it does so, and how it comes to shape our shared visions and imaginations not just of science but also of collective life and the future. In it we look at how science is represented in news and entertainment media, and at some of the subtle ways – such as that shampoo advert – in which it forms part of public culture without us really being aware of it. At least some of these manifestations of technoscience may seem trivial: who really cares about what is represented in a shampoo advert, after all?
What is necessary for building a well-functioning state? The answers, of course, are various, and are often enshrined in constitutions – the principles or laws that define and govern particular nations. In India one such constitutional principle is the notion of scientific temper, which is presented as one of the ten central duties of citizens. ‘This clause’, explain Anwesha Chakraborty and Poonam Pandey, ‘makes embracing scientific and rational thinking and ways of life a duty and responsibility of Indian citizens’. Based on the work and writings of India's first prime minister, Jawaharlal Nehru, scientific temper is:
[T] he scientific approach, the adventurous and yet critical temper of science, the search for truth and new knowledge, the refusal to accept anything without testing and trial, the capacity to change previous conclusions in the face of new evidence, the reliance on observed fact and not on pre-conceived theory, the hard discipline of the mind – all this is necessary, not merely for the application of science but for life itself and the solution of its many problems.
Indian citizens are thus expected to embrace not just science and its applications, but the mindset that is understood as tied to it: critical thinking, the capacity to change one's mind, the rejection of irrationality and ‘religious temper’ (which Nehru framed as the opposite of scientific temper). Science is thus constitutionally central to citizenship. Similarly, in 2009 the then-new President Obama promised to put science in its ‘rightful place’ in US society and politics. In both cases, the assumption is that science is central to society, the state, and to politics, and that its ‘rightful place’ is at the heart of the political system, speaking truth to power. Indeed, for some commentators science and democracy are intimately connected, sharing central values such as rationality and working in constant support of one another. In this view one cannot have one without the other.