The sight of the British Prime Minister lining up with his scientific and medical advisers in the Downing Street briefing room became very familiar to UK citizens during the early stages of the coronavirus (COVID-19) pandemic – the time that the research brought together in The Pandemic and Beyond was being carried out. Each day, three men shared a series of graphs and diagrams to explain the progress and development of the disease, the Prime Minister even going as far as to claim to be guided by ‘Data not dates’ (BBC News, 2021). The pandemic was being seen very much as an epistemic and technical problem. What do we know about this new virus, to what level of certainty, and how does that guide us to act – or not to act? In the Introduction to Volume 1 in this series, Knowing COVID-19: The Pandemic and Beyond, Fred Cooper and Des Fitzgerald noted that, in being ‘guided by the science’ (GOV.UK, 2020), zooming in on ‘data not dates’, COVID-19 decision-makers de-prioritised the importance of human stories about meaning and experience. In the pandemic world, the world of the briefing room, of the graphs and diagrams, people and viruses alike comprised the data points to be studied, counted, governed and regulated, individual pieces to be reorganised according to algorithmic and scientific outputs. The focus in Volume 1 was on how humanities expertise can be a part of producing new knowledge on a novel infectious disease. In Volume 4, our focus is on how humanities research can inform and support better decision-making in the next pandemic.

Having started inside the briefing room, we now look outside. We zoom out from the graphs and diagrams, expanding the focus from the data points to the people they represent. This is the world in which the humanities researchers, whose contributions shape this book, were bringing their expertise to bear. The conversations we had with our research participants were often difficult, and occasionally emotional, as we worked together to understand what was going on. New or developing research methods were sometimes employed as researchers worked to bridge the gap between descriptions of what was happening and what people thought ought to be happening (see, for example, Frith, 2012). People outside the briefing room were living and working in a very different pandemic world; a messier and more entangled world. In this world, people’s stories co-existed with stories about the virus, about the suffering and sacrifices of ‘key workers’, and about people dying alone. In no sense was co-existence with the virus an individual affair. Instead, people were intra-acting as components of communities that pulled together wherever they could, supporting each other, virtually where that was all that was permitted, and forming a broader, relational whole that was much larger than the sum of the parts.

But as infection rates climbed, human connections, personal fulfilment, social groupings and leisure activities inexorably became intertwined with matters of governance and authority, the rule (and role) of law and legality, the economy and the markets, as well as public health, infection prevention measures – and the virus itself. Questions of ethics moved far beyond well-trodden normative assertions of rights and wrongs, upheld by predictable and transparent laws and regulatory processes. In this world of uncertainty, fear of infection and death loomed large. Where authoritarian lockdowns prevented social interaction, with the size of permitted gatherings seeming to reduce on a weekly basis, people understood the necessity for draconian measures and (generally) complied. After all, we were all in this together, weren’t we?

That, in fact, we weren’t all in it together was soon to become clear. The revelation that Boris Johnson, the (then) Prime Minister had hosted numerous gatherings in his home and office while the rest of the country had been in lockdown raised questions about his moral credibility, and the general fitness of many of his ministerial colleagues to occupy public office. In their recent book, Fred Cooper and colleagues (2023) describe how a patterning of shame and shaming emerged within the UK’s pandemic landscape. They discuss, through a series of case studies, how experiences of shame, shaming and stigma dominated personal and public life during the COVID-19 pandemic, with the use of terms like ‘COVIDiot’ seeing people divided into categories of morally worthy or morally unworthy, and being shamed or praised accordingly. Importantly, rather than minimising this, they argue that the UK government’s actions actually worsened this trend. Offering a ‘COVID-19 and shame timeline 2020’ (Cooper et al., 2023: vii–xii), they situate the ‘shameful’ personal actions of the Prime Minister and other senior public figures within the broader catalogue of rules and restrictions imposed on everyone else, asking why public officials felt it necessary to deflect shame from themselves regardless of the public health consequences.

Elsewhere in the growing corpus of COVID-19 literature, to which this book contributes, academics are examining the many aspects and implications of pandemic decision-making across various aspects of life, society and democracy. Emphasising the inter- and intra-connectedness of virus, people and place, we find, for example, literature discussing microbiology and the built environment and how the decision-making of both public officials and homeowners might change following the pandemic (Dietz et al., 2020). Academic commentary suggests that, in looking to the future more broadly, experiences of the pandemic have changed the notion of ‘community’ (Alberti, 2020), and that people want different things from their leaders now (Youngs, 2020). Suggesting that democracy is the missing link in European Union recovery plans, Youngs advocates for stronger democratic participation as a positive and helpful part of the post-virus rebuilding phase. Similarly, Parry et al. (2020) describe how democratic spaces were reconfigured during COVID-19, noting how participatory spaces shrank, overlapped and invaded each other and concluding that democracies are generally not prepared to sustain deliberation and participation in times of crisis. For this reason, participation needs to be further institutionalised. Many contributors to this book, drawing on their investigations of pandemic decision-making, echo this call.

Alongside an examination of pandemic governance in academic literature and commentary, the decision-making behind pandemic rules and restrictions in the UK is, at the time of writing, subject to review by various official bodies, including the UK COVID-19 Inquiry and the Independent Commission on UK Public Health Emergency Powers.¹ Emphasising the need for a detailed reflection on decision-making during the pandemic, the House of Lords Select Committee on the Constitution (Constitution Committee) had noted, in June 2021 that, while exceptional measures had been necessary to limit the spread of COVID-19 and keep communities safe, many of the decisions that had transformed everyday life by imposing unprecedented restrictions on ordinary activities had been made with extremely limited parliamentary oversight (House of Lords, 2021). As a result, the Constitution Committee recommended that a review of the use of emergency powers by the government, and the (lack of) scrutiny of those powers by parliament, should be undertaken. The Constitution Committee was particularly keen to emphasise that the approach adopted in response to the pandemic must not be used to justify weakened parliamentary scrutiny of government action in response to any future emergencies (House of Lords, 2021; emphasis added). In response to the Constitution Committee’s report, the Independent Commission on UK Public Health Emergency Powers (the Emergency Powers Commission) was convened. The Emergency Powers Commission has a broad remit to provide a legal and constitutional analysis of existing and alternative emergency public health laws, parliamentary procedures for responding to public health emergencies, and the ways in which emergency laws and public health guidance were made, scrutinised, utilised and disseminated during the COVID-19 pandemic (British Institute of International and Comparative Law, 2023).²

The work of the Emergency Powers Commission bridges the briefing room world and the messier human world in some respects. Among the issues it will examine are, for instance, the extent to which government messaging distinguished between binding law and non-binding public health advice. This subtle distinction appeared to be blurred further by those implicated in the Partygate events, as they sought to avoid any accusations of wrongdoing (UK Parliament, 2023) but also stimulated discussion outside the briefing room about exceptional executive powers in an emergency, the role of trust, and the importance of the principles of good governance – such as selflessness, integrity, accountability and honesty in leadership.

In this book we explore these issues further. Specifically, we consider what it means to be in a decision-making situation whereby rational or epistemic framings of the COVID-19 pandemic, with a focus on data and scientific ways of knowing the world, rub up against more entangled human experiences and existences. How can (or should) we re-focus our perspectives and our systems as a result? Looking at matters ranging from the authority of the World Health Organization (WHO) and the power of data during an emergency, to the role of public engagement as a source of policy evidence, we reflect on what it means to govern ethically in a pandemic, and whether (and how) the expected standards and norms of public life, evidence and decision-making apply in such circumstances. We also reflect on how power, authority, trust and the sense of the ending of the pandemic are inextricably linked, creating a need for ethics to move beyond normative assertions of the law and regulations, whether in hospitals or in the halls of parliamentary power.

Bringing together findings from The Pandemic and Beyond research projects (all of which were carried out while the pandemic was unfolding), the chapters that follow reflect the voices of the authors’ research participants as they consider how we can grapple, collectively, with such challenges. All of the chapters are linked by a focus on how decisions have been made, but nevertheless look at the pandemic from very different perspectives. In this way, we produce a series of different portraits of pandemic decision-making that are marbled through with various common themes relating to ethics, values, governance, trust and inclusion. Indeed, some of these themes can be traced through the entire series. For instance, in their introduction to Adaptation and Resilience in the Performing Arts: The Pandemic and Beyond, Pascale Aebischer and Rachael Nicholas highlight values of inclusion, community, innovation, equity and care that inform their authors’ reflections on the impacts of the pandemic. Similar guiding reflections underpin the chapters that follow in this book, as our authors explore decision-making processes ranging from the everyday to the global.

More specifically, the chapters draw out discussions relating to the importance of values and ethics, both of which take on extra importance in the context of public health decision-making, where decisions can have physical impacts on human bodies. The importance of institutional structures of governance and scrutiny – and the consequences of their neglect – are thrown into sharp relief, as is the crucial importance of involving diverse voices in decision-making, acknowledging that the effects of the pandemic are not felt in the same way by different individuals, groups or communities. Collectively, the chapters reveal wider sociological lessons about how social and institutional arrangements (along with the virus itself) have co-produced (and undermined) power and authority, and how this has amplified some voices while sidelining or even silencing others. This book thus highlights the crucial role of humanities research in helping us look beyond ‘the science’, exposing and exploring the plural pathways that link microbial organisms and humans; children and data; decision-making and infection prevention. We consider how the pandemic could have been otherwise and offer a series of perspectives on how, now and into the future, governance, democracy and ethics in crisis-decision-making must change.

The book starts with a chapter by Lina Minou, James Wilson and Daniel Herron, who question how we understand the ‘form’ of an epidemic (and by extension, a pandemic). Reflecting on the relationship between the intellectual constructs of the epidemic phenomenon and its meaning as an occurrence within an individual life, they argue that while a key feature of an epidemic is the way in which cases of infection suddenly arise and then fall, in reality pinpointing these precise points is difficult and anyway does not do justice to the meaning of an epidemic for an individual as a life-event. Instead, they argue that the complexity of the several manifestations of the epidemic reality demands an equally complex conceptual framework. In a pandemic, understood as a collection of interconnected epidemics, or an epidemic that travels, this complexity is amplified. In warning against the danger of presenting too linear and too homogeneous an understanding of pandemics, the authors set the scene in Chapter 1 for the chapters that follow, which tell the different stories of governance and decision-making that have emerged from the research projects represented in the volume.

Chapter 2 starts with tales from the fight against COVID-19 in National Health Service (NHS) hospitals in the UK. Caroline Redhead, Anna Chiumento, Sara Fovargue, Heather Draper and Lucy Frith explore the everyday ethical challenges faced by staff as NHS maternity and paediatrics services were ‘reset’ during the pandemic. Such challenges were often embedded in changes to working practices intended to keep staff safe, and to protect hospital communities from COVID-19 infection. However, these changes reduced healthcare professionals’ ability to ‘care’ for their patients, where care is understood as embracing the interpersonal relationships between the patient (and their family) and the healthcare team. Although they protected healthcare staff and patients from COVID-19, infection prevention and control measures caused harm by creating barriers to relational interaction and engagement. In this chapter, the authors consider the significance of relationships in a healthcare context. They describe the theoretical underpinnings of a logic of relationality in healthcare, which they argue should underpin healthcare decision-making.

In Chapter 3, the focus shifts from healthcare to social care. Rather than providing care in the context of treatment for a medical condition, social care is about offering people support with their day-to-day needs, whether they arise from illness, disability, old age or poverty. In the UK, the social care ‘system’ distributes responsibilities and obligations for this type of support between the welfare state, voluntary sectors and communities, and families. In this chapter, Cian O’Donovan describes and discusses the significant existing problems in social care data infrastructures, and how these were exacerbated and amplified by government decision-making during the pandemic. Starting from the catastrophic government decision to discharge people from hospitals into care homes for the elderly without considering the significant risks of COVID-19 transmission, the author considers how social care data systems could better support outcomes for care home residents and social care requirements more generally.

Data use during the pandemic is also the focus of Chapter 4, in which Melanie Smallman, Cian O’Donovan, James Wilson and Jack Hume ask whether data ethics have been a casualty of the pandemic. Describing three key ‘episodes’ in the COVID-19 pandemic where data played a key role – and which raised significant ethical issues – they demonstrate how emergency measures were intimately linked with the collection and analysis of data at an accelerated pace, and how data formed a key part of the logic by which power was wielded over the public. They argue that the authority given by the seeming objectivity of data was sufficiently powerful to enable the British Prime Minister and government to enact, and then repeal (arguably too quickly), severe restrictions on civil liberties in the UK, in some instances appearing to bypass the relevant ethical advisory boards and escape the scrutiny of ‘traditional’ data ethics frameworks. Drawing parallels to the regulation of drugs research during a pandemic, they conclude that a set of ‘emergency data ethics’ is needed to help guide thinking in a future such emergency.

In Chapter 5, the centrality of data-driven decision-making to the UK government’s response to COVID-19 is considered from the perspective of children. Claire Bessant and Rachel Allsopp, working with child rights organisation, Investing in Children, as part of the Observatory for Monitoring Data-Driven Approaches to COVID-19, describe young people’s views about how their data was used during the pandemic. They note that government decisions (to close schools, to introduce lockdowns, social distancing and self-isolation requirements, and to determine exam results using flawed algorithms) have had a significant impact upon children and young people’s mental and physical health and wellbeing and upon their education, negatively affecting children’s rights. Reporting that more work is clearly needed to ensure that young people’s views are heard and their stories told, this chapter incorporates the voices of young people into the authors’ recommendations to policymakers for engaging effectively with this vital section of the population.

Continuing the theme of missing voices in government decision-making, the focus of Chapter 6 is on pandemic public policymaking in the UK. Lamenting the absence of the public voice in ethically laden policy choices, such as vaccine prioritisation, Jamie Webb and Kiran Kaur Manku consider how the ‘public’ has been characterised in, how publics were present or absent from, and whether publics were consulted as part of decision-making during the COVID-19 crisis. By interrogating the theoretical underpinnings and ethical justifications for practical engagement with publics, the authors suggest avenues for more proactive public engagement in the continuing COVID-19 response as well as in planning for the pandemics to come.

In Chapter 7, Reema Patel widens the focus on the theme of missing voices in government to a global perspective. She notes that the onset of COVID-19 resulted in the majority of democratic nation states worldwide implementing a state of emergency, often without widespread societal debate or discussion in key democratic spaces such as parliamentary chambers. Thus, democratic public participation in national decision-making was a casualty elsewhere as well as in the UK. The author contends that this created contradictory messaging – on the one hand, appealing to the core concepts of democracy and the rule of law to ask for public compliance and support, but on the other, actively undermining these core concepts by overstepping their legal authority in various ways. She suggests that the result was a crisis of confidence in the pandemic response, rather than confidence in a crisis. Drawing from a wide range of examples and the deliberations of two UK citizen juries considering the fundamentals of good governance, she argues that in future crises, democratic nation states need to create participatory infrastructures for democracy in a crisis to complement (and act as a check on) the risks of executive power overreach through the blunt instrument of emergency decision-making.

Continuing the global perspective, Chapter 8 considers the use of emergency powers by the WHO, exploring the extent to which the use of these powers aligns with principles of good global health governance. Harry Upton, Abbie-Rose Hampton and Mark Eccleston-Turner outline why good governance matters for international organisations, suggesting that, while the COVID-19 pandemic has emphasised the vital importance of an effective and efficient coordinated response to emerging health threats on a global scale, it has also demonstrated that the current system ultimately lacks the means and mechanisms through which to ensure good global health governance within and between key organisations in global health, most notably the WHO itself.

To conclude, an important point we want to leave readers of this volume to ponder is the question of whether or not we need special measures for making decisions in a pandemic (or similar such emergency). A number of the chapters in this volume flag up insufficiencies in the way in which decisions were made during the early stages of the COVID-19 pandemic in the UK. For instance, in Chapter 5, Claire Bessant and Rachel Allsopp argue that data-driven decision-making produced policies that disproportionately harmed children and young people, without offering them a voice in return. The authors advocate for better engagement with young people in future. Similarly, in Chapters 6 and 7, Jamie Webb, Kiran Kaur Manku and Reema Patel argue that increased public engagement in decision-making would have helped make better decisions – not least by strengthening the voices of those overlooked and perhaps worst affected by the pandemic. But what remains unclear is whether these insufficiencies were the result of the absence of mechanisms by which these voices or perspectives could have been brought into consideration, whether they were simply inappropriate under such urgent and straightened conditions, or, as Melanie Smallman, Cian O’Donovan, James Wilson and Jack Hume argue in Chapter 4 was the case with ethics advice, the checks and balances that were in place to ensure good policymaking were neglected, ignored or overridden by political leaders in this instance. In other words, was the pandemic the extraordinary condition from which we learn systemic lessons, or, rather, did the tone set by the government of the day marginalise, disable or ignore systems and processes that were already sufficiently dynamic and flexible to have enabled a different approach?

Perhaps history (together with the outcome of the UK COVID-19 Inquiry and the work of the Public Health Commission, both ongoing at the time of writing) will enable us to make a better judgement on this. Suffice, for now, to say that gaining a clearer picture of the extent to which the COVID-19 pandemic in the UK was an ‘ordinary emergency’ (as Lina Minou, James Wilson and Daniel Herron put it in their chapter) or whether there were other factors at play significant in creating an extraordinary situation (such as might be argued to have been the case for the healthcare professionals whose experiences informed the discussion in Chapter 2). The answers to these questions will be vital in understanding how we all need to reflect upon our pandemic life-event experiences of the last few years. Maybe, as we emerge from the pandemic through, and as a result of, accepting our entangled intra-relationships, the lessons drawn out in this volume will support decision-makers in both ordinary times and extraordinary emergencies.