The significance of big data for driving health research and improvements in patient care is well recognised. Along with these potential benefits, however, come significant challenges, including those concerning the sharing and linkage of health and social care records. Recently, there has been a shift in attention towards a paradigm of data sharing centred on the ‘trusted research environment’ (TRE). TREs are being widely adopted by the UK’s health data initiatives including Health Data Research UK (HDR UK),1 Our Future Health2 (...) and Genomics England.3 A recent review commissioned by the UK’s Department of Health and Social Care (hereafter referred to as the ‘Goldacre Review’) places TREs at the heart of its recommendations around the future of National Health Service (NHS) health data sharing for research, describing them as the ‘clear path forward’ to a health data system in which trust is ‘earned’ through ‘provable, credible steps to protect patient privacy, and by being transparent with everyone about everything that is done with their deepest medical secrets’.4 We argue that rather than building public trust, the TRE model actually reduces the need for trust in the use and sharing of patient health data. This is because trust is importantly connected to vulnerability and uncertainty; an essential part of trusting someone is accepting that one’s trust could be disappointed or betrayed. In attempting to provide assurances or guarantees of data privacy and security, TREs strive to remove this vulnerability, and so remove the need for trust. We do not see this as a problem and are broadly supportive of this kind of data sharing model because of the increased security and oversight it provides. However, having argued that TREs are not actually concerned with trust, we consider the importance of being precise about the words that we use …. (shrink)

In our recent paper ‘Trust and the Goldacre Review: Why TREs are not about trust’1 we argue that trusted research environments (TREs) reduce the need for trust in the use and sharing of health data, and that referring to these data storage systems as ‘trusted’ raises a number of concerns. Recent replies to our paper have raised several objections to this argument. In this reply, we seek to build on the arguments presented in our original paper, address some of the (...) misunderstanding of our position expressed in these replies, and sketch out where further research is needed. One of the central arguments of our original paper was that the language we use to describe data-sharing initiatives matters, because the way things like TREs are presented and framed makes a difference to what people can, and should, expect from them. However, there is a more basic and obvious problem with referring to these institutions as ‘trusted’: it begs the question about whether these institutions are, in fact, trusted. We cannot know in advance of these initiatives being implemented, established, and appropriate assessments completed, whether they are actually trusted. Further questions abound: whom might TREs eventually be trusted by? If some people end up trusting them, but not others, is it appropriate to call them ‘trusted’? At best, this is simply a case of wishful thinking (and a more accurate name would be ‘hopefully-TREs’). More problematically, this may be an instance of ‘trustworthiness-signalling’: an attempt to convince others to trust, without meeting the requirements for genuine trustworthiness. By calling TREs ‘trusted’, the implication seems to be that placing our trust in them is perfectly fine: they are the kinds of things that are trusted by others and can safely be trusted by us. But not only does simply calling something ‘trusted’ …. (shrink)

With this article, Paige Patterson identifies six events in the life of Martin Luther that shaped the Reformer and ultimately affected the entire Reformation. By surveying Luther’s journey to Rome, his friendship with Johann von Staupitz, the Leipzig Disputation, the Diet of Worms, his year in Wartburg Castle, and his marriage to Katharina von Bora, Patterson’s goal is for his readers to gain a greater understanding of Martin Luther. In so doing, Patterson encourages his readers to consider the contribution (...) of these events and the people involved to their own lives still today. (shrink)

Memory is the least studied dimension of Augustine's psychological trinity of memory-intellect-will. This book explores the theme of 'memory' in Augustine's works, tracing its philosophical and theological significance. The first part explores the philosophical history of memory in Plato, Aristotle, and Plotinus. The second part shows how Augustine inherits this theme and treats it in his early writings. The third and final part seeks to show how Augustine's theological understanding of Christ draws on and resolves tensions in the theme of (...) memory. The place of memory in the theological anthropology of Augustine has its roots in the Platonic epistemological tradition. Augustine actively engages with this tradition in his early writings in a manner that is both philosophically sophisticated and doctrinally consistent with his later, more overtly theological writings. From the Cassiacum dialogues through De musica, Augustine points to the central importance of memory: he examines the power of the soul as something that mediates sense perception and understanding, while explicitly deferring a more profound treatment of it until Confessions and De trinitate. In these two texts, memory is the foundation for the location of the Imago Dei in the mind. It becomes the basis for the spiritual experience of the embodied creature, and a source of the profound anxiety that results from the sensed opposition of human time and divine time (aeterna ratio). This tension is contained and resolved, to a limited extent, in Augustine's Christology, in the ability of a paradoxical incarnation to unify the temporal and the eternal (in Confessions 11 and 12), and the life of faith (scientia) with the promised contemplation of the divine (sapientia, in De trinitate 12-14). (shrink)

Policy-makers must allocate scarce resources to support constituents’ health needs. This requires policy-makers to be able to evaluate health states and allocate resources according to some principle of allocation. The most prominent approach to evaluating health states is to appeal to the strength of people’s preferences to avoid occupying them, which we refer to as decision utility metrics. Another approach, experienced utility metrics, evaluates health states based on their hedonic quality. In this article, we argue that although decision utility metrics (...) face a number of significant problems, the appropriate response to these problems is not to replace them with experienced utility metrics. Rather, decision utility metrics should be employed in conjunction with experienced utility metrics. Specifically, respondents to decision utility surveys should be provided with the results of experienced utility metrics in an effort to make their decisions better informed and more robust to the deficiencies of decision utility metrics. Ultimately, this approach would improve quality-adjusted life year calculations and enhance the decision-making of policy-makers in allocating resources to support constituents’ health needs. (shrink)

In early modern European natural philosophy and medicine, scholars encountered the problem of the “formless birth” in their studies into generation, alongside “monstrous” and “perfect” births. Such formless births included the hen’s egg, the unformed bear cub, and the human false conception – said to be shapeless lumps of moving flesh – and these types of conceptions influenced how natural philosophers, like William Harvey and Jan Baptiste van Lamzweerde, approached experiments on, or explanations of, generation. This article suggests that the (...) history of these unformed births provides fresh insights into how early modern scholars “thought” with formlessness. That is, early modern scholars drew on a longstanding discourse of shapeless conceptions to address the mechanisms of formless generation, “true” generation, as well as to understand other unformed or interstitial creatures in nature. The article argues that this history of thinking with formless births contributes to our picture of the significant role that unnatural births, such as “monsters”, played in early modern natural philosophy. (shrink)

More than most economic activities, innovation and technological change depend on new knowledge. Economists and other social scientists have demonstrated that the research and development activities of private firms generate widespread benefits to consumers and society at large.The overall economic value to society often exceeds the economic benefits of the innovating firms and is described by economists as spillovers. Knowledge spillovers occur when knowledge created by one company or industry is not contained within that company or industry and thereby creates (...) value for others. Government programs that involve the intermingling of government and private-sector funds as well as personnel will always raise questions about the methods and extent of appropriate government participation. This article examines a government-industry supported project that was effective and successful at creating knowledge spillovers. (shrink)

During the early months of the COVID-19 pandemic, domestic violence came to be understood as a national emergency. In this paper, we ask how and why domestic violence was constructed as a crisis specific to the pandemic. Drawing from newspaper data, we show that the domestic violence victim came to embody the violation of gendered boundaries between “public” and “private” spheres. Representations of domestic violence centered on violence spilling over the boundaries of the home, infecting the home, or the home (...) imploding. While theorists of crisis have focused on the central role of temporality in crisis construction, and especially the performative invocation of “new time,” we argue that crisis rhetoric often relies on anxiety about the transgression of spatial boundaries. Our spatial approach to crisis has two components. First, we argue that crisis framings often invoke the idea that seemingly distinct arenas of social life are becoming disorganized or blurred. And second, because thresholds between social spaces are coded as sacred during crisis, this spatial reordering is rendered dangerous, resulting in calls to resecure boundaries. (shrink)

Patient data is used to drive an ecosystem of advanced digital tools in health care, like predictive models or artificial intelligence‐based decision support. Patients themselves, however, receive little information about these technologies or how they affect their care. This raises important questions about patient trust and continued engagement in a health care system that extracts their data but does not treat them as key stakeholders. This essay explores these tensions and provides steps forward for health systems as they design advanced (...) health information‐technology (IT) policies and practices. It centers patients, their concerns, and the ways they perceive trustworthiness to reframe advanced health IT in service of patient interests. (shrink)

It is commonly agreed that so-called echo chambers and epistemic bubbles, associated with social media, are detrimental to liberal democracies. Drawing on John Rawls’s political liberalism, we offer a novel explanation of why social media platforms amplifying echo chambers and epistemic bubbles are likely contributing to the violation of the democratic norms connected to the ideal of public reason. These norms are clarified with reference to the method of (full) reflective equilibrium, which we argue should be cultivated as a civic (...) virtue in the context of political justification. The paper demonstrates how epistemic bubbles and echo chambers are likely to be detrimental to the disposition to follow the method of reflective equilibrium in the political context. Based on this diagnosis the paper highlights the need for interventions that help cultivate reflective equilibrium as a civic virtue and the need for corresponding interdisciplinary research. (shrink)

Objective Analyze racial differences in comfort with medical research using an alternative to the traditional approach that treats white people as a raceless norm.Methods Quantitative analysis of survey responses (n = 1,570) from Black and white residents of the US to identify relationships between perceptions of research as a right or a risk, and comfort participating in medical research.Results A lower proportion of white respondents reported that medical experimentation occurred without patient consent (p < 0.001) and a higher proportion of (...) white respondents reported that it should be their right to participate in medical research (p = 0.02). Belief in one’s right to participate was significantly predictive of comfort (b = 0.37, p < 0.001). Belief in experimentation without consent was significantly predictive of comfort for white respondents but not for Black respondents in multivariable analysis.Conclusions A rights-based orientation and less concern about the risks of medical research among white respondents demonstrate comparative advantage. Efforts to diversify medical research may perpetuate structural racism if they do not (1) critically engage with whiteness and its role in comfort with participation, and (2) identify and respond specifically to the needs of Black patients. (shrink)

The fossilized primate skull known as the Taungs Baby, discovered in South Africa, was put forward in 1925 as a controversial ‘missing link’ between humans and apes. This essay examines the controversy generated by the fossil, with a focus on practice and the circulation of material objects. Viewing the Taungs story from this perspective provides a new outlook on debates, one that suggests that attention to the importance of place, particularly the ways that specific localities shape scientific practices, is crucial (...) to understanding such controversies. During the 1920s, the fossil itself did not move or circulate from its South African location, a fact that raised methodological concerns in understanding its significance and drew immense criticism from a range of experts. Examining the criticisms regarding the fossil’s failure to circulate draws attention to the importance of centers of accumulation in the analysis of hominid fossils. Diverging from existing histories that primarily emphasize the role of theory in paleoanthropological debates, then, this article argues that scientific practice played an important role in the Taungs fossil controversy. Examining this dimension of the debates has broader implications for revealing the underlying imperial assumptions that guided hominid paleontology during the early twentieth century. (shrink)

Though the invocation to be “reflexive” is widespread in feminist sociology, many questions remain about what it means to “turn back” and resituate our work—about how to engage with research subjects’ visions of the world and with our own theoretical models. Rather than a superficial rehearsal of researcher and interlocutor standpoints, I argue that “reflexivity” should help researchers theorize the social world in relational ways. To make this claim, I draw together the insights of feminist standpoint theory and Bourdieu’s reflexive (...) sociology to lay the foundation for a renewed reflexive project that centers epistemic privilege, the idea that positions of structural exclusion provide the best resources for theorizing social power. Reflexive sociology should consider interlocutors’ experiences of exclusion and contradiction, engaging with sites of alternative knowledge and incorporating them into the object of study. This type of reflexivity provides improved resources for relational theory building. I offer support for these theoretical arguments with a historical analysis of knowledge production in the feminist anti-violence movement. (shrink)

The extinct human relatives known as Neanderthals have long been described as brutish and dumb. This conception is often traced to paleontologist Marcellin Boule, who published a detailed analysis on a Neanderthal skeleton in the early twentieth century. The conventional historical narrative claims that Boule made an error in his analysis, causing the Neanderthals to be considered brutish. This essay challenges the narrative of “Boule’s error,” arguing instead that the brutish Neanderthal concept originated much earlier in the history of Neanderthal (...) research and was, in fact, an invention of the earliest analyses of the first specimen recognized as a Neanderthal in the mid-nineteenth century. I argue that temporally relocating this conception of Neanderthals allows for a better understanding of the interconnected nature of the study of fossil humans and the science of living human races during the nineteenth century. This new view of the brutish Neanderthal sheds light on the earliest phases of the science that became paleoanthropology, while examining the racial, cultural, and political attitudes about race and extinction that accompanied the science at that time. By inspecting the ways in which the Neanderthals’ image was a product of a particular time and place, we gain a perspective that provides a new basis for thinking about the conceptions of hominin fossil species. (shrink)

Since it seems that the leaders of the antiterrorist campaign are scripting their objectives to fit as they go along, the public should be more careful in deciding which policies it wants to support.

Over the past few decades criminal law scholarship has been dominated by moralistic conceptions of the criminal law but recent years have seen the emergence of the so-called ‘political turn’ in criminal law theorizing. In this article I analyze the theory proffered by Vincent Chiao, one of the most persuasive proponents of the political or ‘public law’ trend, in contradistinction to the moralistic theory of criminalization defended by Anthony Duff. I demonstrate that the differences between the two theories are more (...) nuanced and more complex than first appears. In fact, because of how it concerns itself only with moral wrongdoing of a certain kind – namely, public wrongdoing – it turns out that Duff’s theory is best analyzed as a version of the public law account of criminal law. I argue that taking on Chiao’s public law approach, but allowing it to be informed by the principles of Duff’s (rather than Chiao’s) political philosophy, holds out the most promise for reaching a satisfactory conception of criminal law. I finish by considering this conclusion in light of the fact that hybrid theories are nothing new in the debate between retributivism and instrumentalism, a dividing line along which Chiao’s and Duff’s theories fall. I argue that the particular hybrid theory I defend holds important advantages over other such theories. (shrink)

Historians of medicine and generation have long demonstrated how the female body was conceptualized as a site of secrecy in early modern Europe. This essay explores one oft-overlooked organ of the female body—the placenta, which was considered by early modern anatomists to be a particularly challenging secret to uncover. Anatomists who investigated this organ discovered that it was largely absent from the ancients’ accounts of their knowledge of generation, and their own studies of its structure and function revealed a complexity (...) difficult to understand. Through an analysis of anatomical treatises and midwifery guides, this essay investigates how textual and visual knowledge about the placenta was produced and shared by anatomists, medical practitioners, and female midwives. It argues that the secrets of the placenta presented a lucrative opportunity for anatomists to expand their intellectual and financial riches. The study provides fresh insights for historians of science, medicine, and gender and new perspectives on the history of reproduction and embryology. (shrink)

There was more than one response to the nuclear age. Countering well-documented attitudes of protest and pessimism, Muriel Howorth (1886–1971) models a less examined strain of atomic enthusiasm in British nuclear culture. Believing that the same power within the atomic bomb could be harnessed to make the world a ‘smiling garden of Eden’, she utilized traditionally feminine domains of kitchen and garden in her efforts to educate the public about the potential of the atom and to ‘safeguard’ it on their (...) behalf. Boldly entering an overtly masculine arena in which, as a woman and a layperson, she was doubly an ‘other’, Howorth used a variety of publications, organizations and staged events to interpret atomic science and specifically to address women. Her efforts, dating roughly from 1948 to 1962, preceded but had broad overlaps with official Atoms for Peace programmes, and culminated in the formation of the Atomic Gardening Society in 1960 to promote the cultivation of gamma-irradiated seeds by British gardeners. (shrink)

In the era of precision medicine and expanding health information technologies, large representative datasets are considered necessary for addressing health inequities. Partially in response to gro...

This essay examines a controversy that erupted in 2004 over the bones of a human relative discovered in Indonesia, proclaimed to be a new species named Homo floresiensis. It argues that the controversy comprised two intertwined struggles with roots in Indonesia’s colonial history. Indonesia’s transition to an independent country, it contends, gave rise to a particular set of cultural values, scientific practices, and theories that resulted in scientific objects becoming tied to national identity in ways that shaped the debates. Highlighting (...) the imbalances that can occur in cross-cultural negotiations over the study of human relatives, this essay reveals that the circulation of scientific objects is not a simple process. By focusing on how anthropological objects moved—and the claims of ownership and access embedded in those movements—it illustrates the role of local circumstances in shaping that knowledge as it contributes to increasingly global science. (shrink)

This book examines the field of bioethics from an international and regional legal perspective. It focuses on major international law documents such as the United Nations Universal Declaration on Bioethics and Human Rights and UNESCO declarations on human cloning and the human genome. Coverage of regional legal instruments includes the Council of Europe Convention on Human Rights and Biomedicine (the Oviedo Convention) and its Protocols on cloning, transplantation, and research with human beings. Work on surrogacy issues by the Hague Conference (...) on Private International Law is also discussed, as are some African regional legal instruments on biosafety, and stem cell research. (shrink)

A comprehensive measure of organizational culture was developed using a lexical approach, a method typically employed within the study of personality. 1761 adjectives were narrowed down and factor analyzed, which resulted in the identification of a nine factor solution to organizational culture, including the dimensions of: Innovative, Dominant, Pace, Friendly, Prestigious, Trendy, Corporate Social Responsibility, Traditional, and Diverse. Comprised of 135 adjectives most frequently used in describing organizational culture by current employees of several hundred organizations, the Lexical Organizational Culture Scale (...) (LOCS) was found to predict employee commitment, job satisfaction, job search behaviors, and subjective fit better than earlier scales of organizational culture. The study demonstrates that organizational culture measured using a lexical approach such as LOCS was a significant improvement to measuring Organizational Culture using traditional anthropomorphic measures of organizational culture. Scales for each of the nine factors identified in the lexical study are developed and validated. (shrink)

While the medical treatment of older individuals often results in desirable outcomes, indiscriminate use of aggressive treatment at the end-of-life can cause paradoxical harm and suffering. Comprehensive assessment and communication can help foster decisions that consider the effect of frailty on health outcomes.

In this review of the central tenets of hope theory, we examine the meta-theoretical, theoretical, and methodological foundations of the literature base. Our analysis moves from a broad examination of the research landscape in hope theory across disciplines, to a deeper investigation of the empirical literature in university students. This review highlights the significant impact of this body of research in advancing our understanding of aspects of thriving characterized by hope. However, we also evidence several limitations that may impede the (...) advancement of the next wave of growth in this field. To address these limitations, we argue for an interdisciplinary approach to expanding the meta-theoretical, theoretical, and methodological horizons, enabling a more dynamic systems approach to the study of hope. Drawing on the intersection of positive psychology with systems thinking, we describe a methodological approach that enables a deeper examination of the processes and interactions through which hope emerges, using an analysis of the lived experience of young people. It is proposed that this research agenda will bring to life an alternate story about the resourcefulness of our youth through their own voice, enabling us to leverage this in the design of more effective strategies to facilitate hope in the future. This research agenda provides a roadmap that will provide alternative methodologies that address the current limitations in the field of hope research and, importantly, can provide fuel to spur on the acceleration of the next wave of research and practice in the field of positive psychology more broadly. (shrink)

Has the Internet changed the pattern of social relations? More specifically, have social relations undergone any systematic change during the recent widespread diffusion of new communications technology? This question is addressed using a unique longitudinal survey that bookends the entire period of Internet diffusion in two African nations and one Indian state. We analyze data on nine professional linkages reported by a population of agricultural and environmental scientists in Kenya, Ghana, and Kerala over a sixteen-year period. Factor analysis reveals two (...) clusters of relationships, one interpretable as traditional scientific exchange, the other indicating mediated forms of collaboration. While collaboration increases in frequency, friendship declines. We interpret this shift as a consequence of communications technology that facilitates formal projects, reducing the affective dimension of professional association. (shrink)