Realising the societal gains from publicly funded health and medical research requires a model for a reflexive evaluation precedent for the societal impact of research. This research explores UK Research Excellence Framework evaluators’ values and opinions and assessing societal impact, prior to the assessment taking place. Specifically, we discuss the characteristics of two different impact assessment extremes – the “quality-focused” evaluation and “societal impact-focused” evaluation. We show the wide range of evaluator views about impact, and that these views could be (...) conceptually reflected in a range of different positions along a conceptual evaluation scale. We describe the characteristics of these extremes in detail, and discuss the different beliefs evaluators had which could influence where they positioned themselves along the scale. These decisions, we argue, when considered together, form a dominant definition of societal impact that influences the direction of its evaluation by the panel. (shrink)

Over the past decade, umbilical cord blood (UCB) has routinely been used as a source of haematopoietic stem cells for allogeneic stem cell transplants in the treatment of a range of malignant and non-malignant conditions affecting children and adults. UCB banks are a necessary part of the UCB transplant program, but their establishment has raised a number of important scientific, ethical and political issues. This paper examines the scientific and clinical evidence that has provided the basis for the establishment of (...) UCB banks. We also discuss the major ethical issues that UCB banks raise, including ownership of cord blood, processes for obtaining consent for its collection and storage, and confidentiality. Finally, we review other concerns about commercial non-altruistic banking, including concerns about social justice, equity of access and equity of care. (shrink)

In this introduction we highlight Norbert Elias’s bold attempt to build a general model of the human sciences, integrating the social and natural sciences. We point to a range of different disciplines, emphasizing how he rarely developed a consistent critique of individual disciplines, though he often made some very fruitful suggestions about they should be reconceptualized in a relational and more integrative way. Based on our own research on survival units and the contributions to this special issue, we discuss the (...) innovative potential of his ambition for transdisciplinary research, while at the same time offering an overview of some of the limitations in his theoretical perspective. We reassess his attempt to integrate the natural and social sciences within one universal testable model, and, at the same time, we consider areas like religion and economics that were rarely systematically investigated in his own theoretical approach. (shrink)

Volume XXIX of Studies in Contemporary Jewry takes its title from a joke by Groucho Marx: "I don't want to belong to any club that will accept me as a member." The line encapsulates one of the most important characteristics of Jewish humor: the desire to buffer oneself from potentially unsafe or awkward situations, and thus to achieve social and emotional freedom. By studying the history and development of Jewish humor, the essays in this volume not only provide nuanced accounts (...) of how Jewish humor can be described but also make a case for the importance of humor in studying any culture. A recent survey showed that about four in ten American Jews felt that "having a good sense of humor" was "an essential part of what being Jewish means to them," on a par with or exceeding caring for Israel, observing Jewish law, and eating traditional foods. As these essays show, Jewish humor has served many functions as a form of "insider" speech. It has been used to ridicule; to unite people in the face of their enemies; to challenge authority; to deride politics and politicians; in America, to ridicule conspicuous consumption; in Israel, to contrast expectations of political normalcy and bitter reality. However, much of contemporary Jewish humor is designed not only or even primarily as insider speech. Rather, it rewards all those who get the punch line. A Club of Their Own moves beyond general theorizing about the nature of Jewish humor by serving a smorgasbord of finely grained, historically situated, and contextualized interdisciplinary studies of humor and its consumption in Jewish life in the modern world. (shrink)

This paper examines the interplay of semantics and pragmatics within the domain of film. Films are made up of individual shots strung together in sequences over time. Though each shot is disconnected from the next, combinations of shots still convey coherent stories that take place in continuous space and time. How is this possible? The semantic view of film holds that film coherence is achieved in part through a kind of film language, a set of conventions which govern the relationships (...) between shots. In this paper, we develop and defend a new version of the semantic view. We articulate it for a pair of conventions that govern spatial relations between viewpoints. One such rule is already well-known; sometimes called the "180° Rule," we term it the X-Constraint; to this we add a previously unrecorded rule, the T-Constraint. As we show, both have the effect, in different ways, of limiting the way that viewpoint can shift through space from shot to shot over the course of a film sequence. Such constraints, we contend, are analogous to relations of discourse coherence that are widely recognized in the linguistic domain. If film is to have a language, it is a language made up of rules like these. (shrink)

In recent years, cognitive neuroscientists have began to explore the process of how sensory information gains access to awareness. To further probe this process, event-related functional magnetic resonance imaging was used while testing subjects with a paradigm known as the “attentional blink.” In this paradigm, visually presented information sporadically fails to reach awareness. It was found that the magnitude and time course of activation within the anterior cingulate , medial prefrontal cortex , and frontopolar cortex predicted whether or not information (...) was consciously perceived during the critical period for the attentional blink. These results are discussed in light of a neural framework for conscious processing. (shrink)

In this paper we argue the need to reimagine research ethics frameworks to include notions of environmental sustainability. While there have long been calls for healthcareethics frameworks and decision-making to include aspects of sustainability, less attention has focused on howresearchethics frameworks could address this. To do this, we first describe the traditional approach to research ethics, which often relies on individualised notions of risk. We argue that we need to broaden this notion of individual risk to consider issues associated with (...) environmental sustainability. This is because research is associated with carbon emissions and other environmental impacts, both of which cause climate change health hazards. We introduce how bioethics frameworks have considered notions of environmental sustainability and draw on these to help develop a framework suitable for researchers. We provide a case study of data-driven health research to apply our framework. (shrink)

This paper proposes a refocusing of consent for clinical genetic testing, moving away from an emphasis on autonomy and information provision, towards an emphasis on the virtues of healthcare professionals seeking consent, and the relationships they construct with their patients. We draw on focus groups with UK healthcare professionals working in the field of clinical genetics, as well as in-depth interviews with patients who have sought genetic testing in the UK’s National Health Service. We explore two aspects of consent: first, (...) how healthcare professionals consider the act of ‘consenting’ patients; and second how these professional accounts, along with the accounts of patients, deepen our understanding of the consent process. Our findings suggest that while healthcare professionals working in genetic medicine put much effort into ensuring patients’ understanding about their impending genetic test, they acknowledge, and we show, that patients can still leave genetic consultations relatively uninformed. Moreover, we show how placing emphasis on the informational aspect of genetic testing is not always reflective of, or valuable to, patients’ decision-making. Rather, decision-making is socially contextualised – also based on factors outside of information provision. A more collaborative on-going consent process, grounded in virtue ethics and values of honesty, openness and trustworthiness, is proposed. (shrink)

In April 2020, close to the start of the first U.K. COVID-19 lockdown, the U.K. government announced the development of a COVID-19 contact tracing app, which was later trialled on the U.K. island, the Isle of Wight, in May/June 2020. United Kingdom surveys found general support for the development of such an app, which seemed strongly influenced by public trust. Institutions developing the app were called upon to fulfil the commitment to public trust by acting with trustworthiness. Such calls presuppose (...) that public trust associated with the app can emerge if the conditions for trustworthiness are met and that public trust is simplistic, i.e., linearly the sum of each member of the publics’ individual – U.K. government trust relationship. Drawing on a synthesis of the trust literature and fifteen interviews with members of the public trialling the app on the Isle of Wight, this paper aims to explore what trust mechanisms and relationships are at play when thinking about public trust in the context of the U.K. COVID-19 app. We argue that public trust is a complex social phenomenon and not linearly correlated with institutional trustworthiness. As such, attention needs to widen from calls for trustworthy infrastructures as a way to build public trust, to a deeper understanding of those doing the trusting; in particular, what or whom do people place their trust in when considering whether using the app and why. An understanding of this will help when trying to secure public trust during the implementation of necessary public health measures. (shrink)

This paper examines the consequences of a culture of “personal ethics” when using new methodologies, such as the use of social media sites as a source of data for research. Using SM research as an example, this paper explores the practices of a number of actors and researchers within the “Ethics Ecosystem” which as a network governs ethically responsible research behaviour. In the case of SM research, the ethical use of this data is currently in dispute, as even though it (...) is seemingly publically available, concerns relating to privacy, vulnerability, potential harm and consent blur the lines of responsible ethical research behaviour. The findings point to the dominance of a personal, bottom-up, researcher-led, ‘ethical barometer’ for making decisions regarding the permissibility of using SM data. We show that the use of different barometers by different researchers can lead to wide disparities in ethical practice - disparities which are compounded by the lack of firm guidelines for responsible practice of SM research. This has widespread consequences on the development of shared norms and understandings at all levels, and by all actors within the Ethics Ecosystem, and risks inconsistencies in their approaches to ethical decision-making. This paper argues that this governance of ethical behaviour by individual researchers perpetuates a negative cycle of academic practice that is dependent on subjective judgements by researchers themselves, rather than governed by more formalised academic institutions such as the research ethics committee and funding council guidelines. (shrink)

The UK’s 100,000 Genomes Project has the aim of sequencing 100,000 genomes from UK National Health Service (NHS) patients while concomitantly transforming clinical care such that whole genome sequencing becomes routine clinical practice in the UK. Policymakers claim that the project will revolutionize NHS care. We wished to explore the 100,000 Genomes Project, and in particular, the extent to which policymaker claims have helped or hindered the work of those associated with Genomics England – the company established by the Department (...) of Health to deliver the project. We interviewed 20 individuals linked to, or working for Genomics England. Interviewees had double-edged views about the context within which they were working. On the one hand, policymakers’ expectations attached to the venture were considered vacuous “genohype”; on the other hand, they were considered the impetus needed for those trying to advance genomic research into clinical practice. Findings should be considered for future genomes projects. (shrink)

Performance appraisals are widely used as an HR instrument. This study among 332 police officers examines the effects of performance appraisals from a behavioral ethics perspective. A mediation model relating justice perceptions of police officers’ last performance appraisal to their work affect, perceived supervisor and organizational support and, in turn, their ethical (pro-organizational proactive) and unethical (counterproductive) work behavior was tested empirically. The relationship between justice perceptions and both, ethical and unethical behavior was mediated by perceived support and work affect. (...) Hence, a singular yearly performance appraisal was linked to both ethical and unethical behaviors at work. The finding that ethical and unethical aspects of employee behavior share several of the same organizational antecedents, namely organizational justice perceptions, has strong practical implications which are discussed as well. (shrink)

Digital phenotyping for mental health is an emerging trend which uses digital data, derived from mobile applications, wearable technologies and digital sensors, to measure, track and predict the mental health of an individual. Digital phenotyping for mental health is a growing, but as yet underexamined, field. As we will show, the rapid growth of digital phenotyping for mental health raises crucial questions about the values that underpin and are reinforced by this technology, as well as regarding to whom it may (...) become valuable. In this commentary, we explore these questions by focusing on the construction of value across two interrelated domains: user experience and epistemologies on the one hand, and issues of data and ownership on the other. In doing so, we demonstrate the need for a deeper ethical and epistemological engagement with the value assumptions that underpin the promise of digital phenotyping for mental health. (shrink)

Childress et al. (2023) present the case of a patient with capacity who requests to stay on extracorporeal membrane oxygenation (ECMO) indefinitely and highlight the ethical challenges associated w...

In her paper, Galasso contends that transitioning precision medicine from its current emphasis on healthcare benefits, to a focus on precision public health, may help address the equity concerns th...

In this paper we contribute to “sociology in bioethics” and help clarify the range of ways sociological work can contribute to ethics scholarship. We do this using a case study of an innovative neurotechnology, functional magnetic resonance imaging, and its use to attempt to diagnose and communicate with severely brain-injured patients. We compare empirical data from interviews with relatives of patients who have a severe brain injury with perspectives from mainstream bioethics scholars. We use the notion of an “ethical landscape” (...) as an analogy for the different ethical positions subjects can take—whereby a person’s position relative to the landscape makes a difference to the way they experience and interact with it. We show that, in comparison to studying abstract ethics “from above” the ethical landscape, which involves universal generalizations and global judgements, studying ethics empirically “from the ground,” within the ethical landscape foregrounds a more plural and differentiated picture. We argue it is important not to treat empirical ethics as secondary to abstract ethics, to treat on-the-ground perspectives as useful only insofar as they can inform ethics from above. Rather, empirical perspectives can illuminate the plural vantage points in ethical judgments, highlight the “lived” nature of ethical reasoning, and point to all ethical vantage points as being significant. This is of epistemic importance to normative ethics, since researchers who pay attention to the various positions in and trajectories through the ethical landscape are unlikely to think about ethics in terms of abstract agency—as can happen with top-down ethics—or to elide agency with the agency of policymakers. Moreover, empirical perspectives may have transformative implications for people on the ground, especially where focus on the potential harms and benefits they face brings their experiences and interests to the forefront of ethical and policy discussion. (shrink)

One of the most important goals of out of home placements is to reduce vulnerability and to enable well-being in the long term. This article hermeneutically reconstructs biographies decades after leaving-care to understand the impact of residential care experiences on selected dimensions of care-leavers’ well-being, that were discovered in the data material. For this article three analytic areas were selected from the core of the narratives of former care leavers: Social networks, parenthood and state interventions. The selected findings on long-term (...) outcomes presented here are based on a qualitative research project funded by the Swiss National Science Foundation on life trajectories after residential care. The authors have conducted 37 biographical narrative interviews with former children placed in residential care between 1950 and 1990 in the Canton of Zurich, Switzerland. The analysis of these narrative interviews was structured by the inductive procedures of Grounded Theory. Its foundation is the conceptualisation and dimensionalisation of data through inductive coding within the narratives. Research question: We mainly were interested in aspects of transitions exclusively relevant from the actors’ point of view. The objective of this paper is to learn for the future by taking biographical experiences and long-term outcome in account. As we know residential care facilities have changed in last decades, but structurally some key figures are still continuing. They still interrupt the life course two times: when you start to the live in the institution and when you leave. One main question is how young people manage to integrate residential experiences through their life course and where they keep on struggling until the end of their lives. From a life-course perspective, the impact of social service intention on individual life courses, behind sending the individuals to such facilities, are important to investigate. They implicate relevant information concerning current practice and impact of placing children in residential care. Social networks and experiences of parenthood show why we must frame and accompany transitions out of care. (shrink)

BackgroundThe health sector aims to improve health outcomes and access to healthcare. At the same time, the sector relies on unsustainable environmental practices that are increasingly recognised to be catastrophic threats to human health and health inequities. As such, a moral imperative exists for the sector to address these practices. While strides are currently underway to mitigate the environmental impacts of healthcare, less is known about how health researchers are addressing these issues, if at all.MethodsThis paper uses an interview methodology (...) to explore the attitudes of UK health researchers using data-intensive methodologies about the adverse environmental impacts of their practices, and how they view the importance of these considerations within wider health goals.ResultsInterviews with 26 researchers showed that participants wanted to address the environmental and related health harms associated with their research and they reflected on how they could do so in alignment with their own research goals. However, when tensions emerged, their own research was prioritised. This was related to their own desires as researchers and driven by the broader socio-political context of their research endeavours.ConclusionTo help mitigate the environmental and health harms associated with data-intensive health research, the socio-political context of research culture must be addressed. (shrink)

The problem of absolute generality has attracted much attention in recent philosophy. Agustin Rayo and Gabriel Uzquiano have assembled a distinguished team of contributors to write new essays on the topic. They investigate the question of whether it is possible to attain absolute generality in thought and language and the ramifications of this question in the philosophy of logic and mathematics.

Aproximación al pensamiento de Rodolfo Kusch -- Canto e identidad en el Martín Fierro según Carlos Astrada y Rodolfo Kusch -- Donde el barro se subleva -- La rehabilitación del saber seminal como camino hacia una mística popular -- Kusch y el impulso social de nuestra época -- La barbarización de la civilización, una grieta de antaño -- ¿De dónde pensarnos?

Forensic DNA phenotyping (FDP) is an emerging technology that seeks to make probabilistic inferences regarding a person’s observable characteristics (“phenotype”) from DNA. The aim is to aid criminal investigations by helping to identify unknown suspected perpetrators, or to help with non-criminal missing persons cases. Here we provide results from the analysis of 36 interviews with those who have a professional stake in FDP, including forensic scientists, police officers, lawyers, government agencies and social scientists. Located in eight EU countries, these individuals (...) were asked for their views on the benefits and problems associated with the prospective use of FDP. While all interviewees distinguished between those phenotypic tests perceived to either raise ethical, social or political concerns from those tests viewed as less ethically and socially problematic, there was wide variation regarding the criteria they used to make this distinction. We discuss the implications of this in terms of responsible technology development. (shrink)

In their article, de Groot et al respond to a call to bring investigative genetic genealogy i to the bioethical debate.1 They explore the extent to which the ethical approach used in the medical clinical genetics context can be helpful for conceptualising the ethical issues associated with IGG. They conclude that such an individual-based model, which revolves around notions of consent and privacy, has significant limitations in the IGG context. The authors call for a broader balancing of the benefits and (...) risks of IGG, and the need for collective democratic engagement. de Groot et al ’s paper is a welcome addition to the literature—not only because it is an interesting and important analysis in its own right, but also because it foregrounds the importance of bringing forensic genetic debate to the bioethical audience. While forensic genetics has become increasingly widespread in the criminal justice system, bioethicists have often shied away from engaging with the ethical issues these practices raise.ii Perhaps this relates to the narrowing of bioethics debate over the past half a century to focus primarily on health-related issues,iii or to the techno-legal normative separation of DNA analysis in these two sectors, or perhaps both. Either way, as our desire for an ever-increasing collection and analysis of genetic data continues—and as we have seen in the IGG context—the lines between health, forensics and recreational associated DNA analysis and use are set to become …. (shrink)

En Carl Schmitt en la Segunda República Española Gabriel Guillén Kalle analiza aspectos particulares de Carl Schmitt en ese periodo de nuestra nación en entreguerras. El autor reconoce que la recepción republicana fue primordialmente jurídica, mas esta perspectiva conlleva observar ese concepto de lo polítíco que atraviesa su obra entera. Guillén propone una estrategia para la relectura de Schmitt en ese periodo y para ello analiza a los principales autores que se ocuparon de él, sin desdeñar a algunos menos conocidos (...) como puede ser Zozaya. Un tema importante para nuestra nación es el control de constitucionalidad que Schmitt, siguiendo a Constant con la teoría del poder moderador, encuentra en el Presidente del Reich, y que en la segunda República española se dejó en un organismo, el Tribunal de Garantías Constitucionales que pretendía colocarse por encima de las pasiones, aunque por su composición -poco jurídica- condujo al fracaso. También es de interés cómo Medina sitúa el pensamiento schmittiano de los órdenes concretos en el idealismo objetivo necesitando de dualismos para su existencia. (shrink)

The UK Chief Medical Officer’s 2016 Annual Report, Generation Genome, focused on a vision to fully integrate genomics into all aspects of the UK’s National Health Service. This process of integration, which has now already begun, raises a wide range of social and ethical concerns, many of which were discussed in the final Chapter of the report. This paper explores how the UK’s 100,000 Genomes Project —the catalyst for Generation Genome, and for bringing genomics into the NHS—is negotiating these ethical (...) concerns. The UK’s 100 kGP, promoted and delivered by Genomics England Limited, is an innovative venture aiming to sequence 100,000 genomes from NHS patients who have a rare disease, cancer, or an infectious disease. GEL has emphasised the importance of ethical governance and decision-making. However, some sociological critique argues that biomedical/technological organisations presenting themselves as ‘ethical’ entities do not necessarily reflect a space within which moral thinking occurs. Rather, the ‘ethical work’ conducted by organisations is more strategic, relating to the politics of the organisation and the need to build public confidence. We set out to explore whether GEL’s ethical framework was reflective of this critique, and what this tells us more broadly about how genomics is being integrated into the NHS in response to the ethical and social concerns raised in Generation Genome. We do this by drawing on a series of 20 interviews with individuals associated with or working at GEL. (shrink)