Neuroscientists' everyday experiences of ethics: the interplay of regulatory, professional, personal and tangible ethical spheres.

The ethical issues neuroscience raises are subject to increasing attention, exemplified in the emergence of the discipline neuroethics. While the moral implications of neurotechnological developments are often discussed, less is known about how ethics intersects with everyday work in neuroscience and how scientists themselves perceive the ethics of their research. Drawing on observation and interviews with members of one UK group conducting neuroscience research at both the laboratory bench and in the clinic, this article examines what ethics meant to these researchers and delineates four specific types of ethics that shaped their day-to-day work: regulatory, professional, personal and tangible. While the first three categories are similar to those identified elsewhere in sociological work on scientific and clinical ethics, the notion of 'tangible ethics' emerged by attending to everyday practice, in which these scientists' discursive distinctions between right and wrong were sometimes challenged. The findings shed light on how ethical positions produce and are, in turn, produced by scientific practice. Informing sociological understandings of neuroscience, they also throw the category of neuroscience and its ethical specificity into question, given that members of this group did not experience their work as raising issues that were distinctly neuro-ethical.

Shifting paradigms? Reflections on regenerative medicine, embryonic stem cells and pharmaceuticals.

Will human embryonic stem (hES) cells lead to a revolutionary new regenerative medicine? We begin to answer this question by drawing on interviews with scientists and clinicians from leading labs and clinics in the UK and the USA, exploring their views on the bench-bedside interface in the fields of hES cells, neuroscience and diabetes. We employ Bourdieu's concepts of field, habitus and capital in order to understand stem cell science and cell transplantation. We also build on research on the sociology of expectations, and explore expectations of pharmaceutical approaches in hES research through our concept of 'expectational capital'. In the process we discuss emerging expectations within stem cell research, most especially the 'disease in a dish' approach, where hES cells will be used as tools for unravelling the mechanisms of disease to enable the development of new drugs. We argue that experts' persuasive promises advance their interests in the uncertain stem cell field, and explore how this performative strategy might stabilise the emerging 'disease in a dish' model of translational research.

A qualitative study exploring patients perceived quality of life following an emergency liver transplant for acute liver failure.

Liver transplantation is now an accepted and successful therapy for both acute and chronic liver diseases. Whilst the study of health related quality of life (HRQoL) post-transplantation for chronic liver disease (CLD) has been well documented, there is little data measuring HRQoL following liver transplantation for acute liver failure (ALF), despite super urgent transplantation constituting 16.6% of all United Kingdom liver transplantation. Therefore, the aim of the present study was to document the HRQoL in patients who have received an emergency liver transplant for ALF. Data collection employed between method triangulation, using the Short Form 36 quality of life health questionnaire for both ALF (n=47) and CLD (n=49), and six semi-structured interviews. Only the qualitative element of the study is reported here. Phenomenological analysis of the semi-structured interviews identified four themes relating to the physical changes encountered (inactivity), physical recovery (health transition); changes made to the transplant recipients life styles (modification); and outlook. The majority of transplanted ALF transplant recipients' stated that they have a good quality of life, which was often comparable to their pretransplantation lifestyle. However, the initial recovery process was often difficult and was related to the physical changes instigated from their multi-organ failure and intensive care stay, which can present numerous physical and emotional challenges.

Ethical boundary-work in the embryonic stem cell laboratory.

Most accounts of the ethics of stem cell research are de- contextualised reviews of the ethical and legal literature. In this chapter we present a socially embedded account of some of the ethical implications of stem cell research, from the perspectives of scientists directly involved in this area. Based on an ethnography of two leading embryonic stem cell laboratories in the UK, our data form part of the findings from a larger project mapping the scientific, medical, social and ethical dimensions of innovative stem cell treatment, focusing on the areas of liver cell and pancreatic islet cell transplantation. We explore three key issues: what individual scientists themselves view as ethical sources of human embryos and stem cells; their perceptions of human embryos and stem cells; and how scientists perceive regulatory frameworks in stem cell research. We argue that these dimensions of laboratory practice are all examples of 'ethical boundary-work', which is becoming an integral part of the routine practice and performance of biomedical science. Our work adds to the relatively few sociological studies that explore ethics in clinical settings and to an even smaller body of work that explores scientists' views on the ethical issues relating to their research.

Quality of life following emergency liver transplantation for acute liver failure.

INTRODUCTION: Liver transplantation is an accepted and successful therapy for both acute and chronic liver diseases (CLDs), with good survival outcomes. Whilst the study of health-related quality of life (HRQoL) post transplantation for CLDs have been well documented, there is little data measuring HRQoL following liver transplantation for acute liver failure (ALF) patients. PATIENTS AND METHODS: Data were collected using between-method triangulation; however, only the quantitative element of the study is reported here. Measuring eight health domains, we distributed the short form 36 (SF-36) questionnaire by post to 96 acute and chronic transplant recipients. Differences between the groups were measured using both parametric and non-parametric t-tests. RESULTS: Overall, the patients showed a satisfactory HRQoL; there were no differences between either acute or chronic transplant groups in seven of the eight domains of quality of life. Among the patients transplanted for ALF, there were no differences in HRQoL between patients transplanted for paracetamol hepatotoxicity compared with other indications, and no variations in HRQoL related to recipient gender, employment or length of survival post transplantation. When compared with the UK SF-36 normal values to the ALF transplant recipients, there was a significantly lower physical functioning and role emotional scores. CONCLUSION: Regardless of aetiology, most of recipients transplanted for ALF have a HRQoL comparable with chronic transplant recipients.

From bench to bedside? Biomedical scientists' expectations of stem cell science as a future therapy for diabetes.

The movement of scientific research from the bench to the bedside is becoming an increasingly important aspect of modern 'biomedical societies'. There is, however, currently a dearth of social science research on the interaction between the laboratory and the clinic. The recent upsurge in global funding for stem cell research is largely premised on the promise of translating scientific understanding of stem cells into regenerative medicine. In this paper, we report on the views of biomedical scientists based in the United Kingdom who are involved in human embryonic stem cell research in the field of diabetes. We explore their views on the prospects and problems of translational research in the field of stem cell science. We discuss two main themes: institutional influences on interactions between scientists and clinicians, and stem cell science itself as the major barrier to therapies. We frame our discussion within the emerging literature of the sociology of expectations.

Culture and ageing: reflections on the arts and nursing.

UNLABELLED: AIM; In this paper, we focus on ageing as an area in which nursing, society and the humanities can be profitably conjoined. We illustrate our argument with three case studies of ageing: in painting, opera and ballet. BACKGROUND: There has been a recent spectacular increase in papers devoted to the relatively new field of the medical humanities. We argue for a similar renaissance in thinking about the connections between the arts and nursing. DISCUSSION: First, we consider the paintings of J.M.W. Turner (1775-1851) as examples of loss, ageing and death. Second, we draw upon Leos Janácek's opera 'The Makropulos Case' (1926) as a focus for debate about human mortality. Third, we review some ethnographic research on the balletic body as an example of cultures of youthful ageing. CONCLUSION: A focus on the embodiment of vulnerability is a productive catalyst for research on the intimate connections between self and society, biology and culture, and reason and emotion. Such a research agenda would be the hallmark of a holistic approach to the arts and nursing.

Fractured identities: injury and the balletic body.

Social worlds shape human bodies and so it is inevitable that there are strong relationships between the body, professional dance and identity. In this article we draw on Bourdieu's notions of habitus, and various forms of capital, as the main theoretical framework for our discussion. Our ethnography of the balletic body elicited dancers and ex-dancers' perceptions of their bodies and sought to reveal some of the facets of their embodied habitus. The sheer physicality of their working lives - of feeling exhausted, sweaty and out of breath - is something dancers (like all athletes) become 'addicted to'. Ageing and injury can reveal this compulsion to dance and so dancers invariably find it very difficult to, for example, give up class once they retire from the stage; or miss a performance if they have a 'slight injury'. In other words, the vocational calling to dance is so overwhelming that their balletic body is their identity. In addition, there is an unremitting loop between individual habitus and institutional habitus (the ballet company), which affects both the meaning and management of injury. All our informants at the Royal Ballet (London: n = 20) had suffered dance injuries. The injured, dancing body is perceived as an inevitable part of a career in ballet. Everyone spoke of the improved athleticism of dancers, and of the expansion in facilities to maintain healthy dancers. However, most dancers can expect several major injuries during their careers. Such epiphanies force dancers to confront their embodiment, and their thoughts invariably turn to their body, career and self. Critical injuries threaten to terminate a dancer's career and so endanger their embodied sense of self. On a more everyday level, dancing and performing with painful, niggling injuries is the norm.

Corps de ballet: the case of the injured ballet dancer.

This paper contributes to debate on social constructionism in the sociology of health and illness through a study of injury among ballet dancers. In this empirical study of classical ballet dancers, we outline a phenomenology of the injured and ageing body in terms of a critical commentary on constructionism. We explore dancers' experiences of embodiment to illustrate our critique of recent interpretations of dance as a textual practice. Those forms of social constructionism that define the body as a text provide a forceful attack on discourses of authority and legitimation, but we argue that they are problematic as epistemologies and ontologies of embodiment. Through a phenomenological understanding of the experiences of embodiment, we observe how injury and ageing disrupt the practical accomplishments that underpin the ballet habitus and the dancer's identity. Although ballet injuries can terminate a dancing career, they are accepted as an inevitable part of the vocation of ballet. Our aim is to understand the interaction between injuries, dancers' experiences of discomfort and the social support that emerges from the ballet dancers as a social group. We draw on the concepts of social solidarity and collective consciousness in Emile Durkheim to show that injury is mediated through the social bonding of dancers into a professional ballet company, where injury is accepted as a sign of vocational commitment, and suggest that this 'collective effervescence' gives a novel meaning to the idea of a corps de ballet.

Analysing data using grounded theory.

Grounded theory is a systematic research approach for the collection and analysis of qualitative data. The aim of the grounded theory approach is to generate an explanatory theory from the data being analysed, rather than trying to 'fit' the data into an existing theoretical framework ( 1 , 2 ).