Social scientists have drawn attention to the role of hype and optimistic visions of the future in providing momentum to biomedical innovation projects by encouraging innovation alliances. In this article, we show how less optimistic, uncertain, and modest visions of the future can also provide innovation projects with momentum. Scholars have highlighted the need for clinicians to carefully manage the expectations of their prospective patients. Using the example of a pioneering clinical team providing deep brain stimulation to children and young (...) people with movement disorders, we show how clinicians confront this requirement by drawing on their professional knowledge and clinical expertise to construct visions of the future with their prospective patients; visions which are personalized, modest, and tainted with uncertainty. We refer to this vision-constructing work as recalibration, and we argue that recalibration enables clinicians to manage the tension between the highly optimistic and hyped visions of the future that surround novel biomedical interventions, and the exigencies of delivering those interventions in a clinical setting. Drawing on work from science and technology studies, we suggest that recalibration enrolls patients in an innovation alliance by creating a shared understanding of how the “effectiveness” of an innovation shall be judged. (shrink)

This article reviews practitioners’ evaluations of in-hospital ethics seminars. A qualitative study included 11 innovative in-hospital ethics seminars, preceded and followed by interviews with most participants. The settings were obstetric, neonatal and haematology units in a teaching hospital and a district general hospital in England. Fifty-six health service staff in obstetric, neonatal, haematology, and related community and management services participated; 12 attended two seminars, giving a total of 68 attendances and 59 follow-up evaluation interviews. The 11 seminars facilitated by an (...) ethicist addressed the key local concerns of staff about the social and ethical consequences of advances in genetics and their impact on professional policies and practice. Seminar agendas were drawn from prior interviews with 70 staff members. During evaluation interviews, participants commented on general aspects that they had enjoyed, how the sessions could be improved, timing, the mix of participants, the quality of the facilitation, whether sessions should be more challenging, after-effects of sessions, and interest in attending seminars and contacting the ethicist in future. Participants valued the increased interprofessional understanding and coherent discussion of many pressing issues that addressed important though seldom discussed ethical questions. The seminars worked well in the different hospitals and specialties. (shrink)

In 2013 the Nuffield Council on Bioethics launched their report Novel Neurotechnologies: Intervening in the Brain. The report, which adopts the European Commission’s notion of Responsible Research and Innovation, puts forward a set of priorities to guide ethical research into, and the development of, new therapeutic neurotechnologies. In this paper, we critically engage with these priorities. We argue that the Nuffield Council’s priorities, and the Responsible Research and Innovation initiative as a whole, are laudable and should guide research and innovation (...) in all areas of healthcare. However, we argue that operationalising Responsible Research and Innovation requires an in-depth understanding of the research and clinical contexts. Providing such an understanding is an important task for empirical ethics. Drawing on examples from sociology, science and technology studies, and related disciplines, we propose four avenues of social science research which can provide such an understanding. We suggest that these avenues can provide a manifesto for empirical ethics. (shrink)

This paper reports from an ongoing multidisciplinary, ethnographic study that is exploring the views, values and practices (the ethical frameworks) drawn on by professional staff in assisted conception units and stem cell laboratories in relation to embryo donation for research purposes, particularly human embryonic stem cell (hESC) research, in the UK. We focus here on the connection between possible incidental findings and the circumstances in which embryos are donated for hESC research, and report some of the uncertainties and dilemmas of (...) our staff participants. We explore the views of our study participants in relation to two themes: (1) rights to information and anticipating how donors might be informed about future research findings and (2) occupational work goals and trust. (shrink)

In this paper, we present the first stage of an empirical bioethics project exploring the moral sources of paternal responsibilities and rights. In doing so, we present both (1) data on men's normative constructions of fatherhood and (2) the first of a two-stage methodological approach to empirical bioethics. Using data gathered from 12 focus groups run with UK men who have had a variety of different fathering experiences (n = 50), we examine men's perspectives on how paternal responsibilities and rights (...) are generated and the significance of the genetic connection within the father–child relationship. We do not attempt to explore men's experiences of fatherhood or their fathering practices; and neither is the analysis driven from a particular sociological perspective. Rather, we explore men's normative constructions of fatherhood in order to present accessible data that might be of significance to the philosophical/moral debate on the sources of paternal rights and responsibilities. (shrink)

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)

In this paper we set out to explore the enactments of risk by clinicians involved in the development of stem cell therapy for liver disease. In the process, we contribute to a performative re-thinking of how ‘risk’ can be analytically treated in relation to health. The bulk of the paper, drawing on interview data, is concerned with how clinicians’ accounts about the risks entailed in their research-oriented work performatively ‘make’ clinicians themselves, but also various other ‘constituencies’ – notably, publics and (...) regulatory actors, and also such diverse ‘entities’ as scientific rigour and ethics. We trace the ways in which they enact the complexities of taking risks in the context of public demands, regulatory constraints, and resource limitation and explore how clinicians tend to represent themselves as caught between the ‘rock of courage’ and the ‘hard place of caution’. (shrink)

In this article we focus upon the embodiment of vulnerability as an area in which medicine, society and the humanities can be profitably conjoined. We illustrate our argument with two interrelated case studies of narratives of the embodiment of ageing and longevity. First, we draw upon Leoš Janáček’s opera The Makropulos Case (1926) as a locus for debates about human longevity. Second, we discuss 70-year-old Janáček’s decade of unrequited love for a woman 37 years younger than himself, through an examination (...) of their intimate letters. We suggest that both the opera and elements of Janáček’s biography illuminate the passionate emotions that are often hidden behind ‘the mask of ageing’. Finally, we propose that a focus on the embodiment of vulnerability is a productive catalyst for research on narratives of ageing. (shrink)

This paper aims to make an empirically informed analytical contribution to the development of a more socially embedded bioethics. Drawing upon 10 interviews with cutting edge stem cell researchers (5 scientists and 5 clinicians) it explores and illustrates the ways in which the role positions of translational researchers are shaped by the ‘normative structures’ of science and medicine respectively and in combination. The empirical data is used to illuminate three overlapping themes of ethical relevance: what matters in stem cell research, (...) experimental treatment, and responsible claim making (as contrasted with ‘hype’. Finally, we suggest that this kind of ‘descriptive’ ethical analysis has potential relevance for understanding other substantive areas of stem cell ethics in practice, and we briefly consider the questions our analysis raises about role positions and ethical agency, and the implications for bioethics as a field of scholarship. (shrink)

Bringing together speeches given at the Institute's annual King Day convocation, this book celebrates two decades of commitment by MIT to honoring the memory and furthering the work of Martin Luther King, Jr. In reading these speeches, one catches in reflection twenty years of turmoil and change, some positive (including an increasing number of speakers drawn from the ranks of MIT's African-American alumni/ae) but much negative, in which Dr. King's dream has been a continuing beacon for action. Speakers have included (...) leaders who are prominent both nationally and in the local (Boston/Cambridge) community, in accordance with Dr. King's dual emphasis on global and local issues. The book closes with Coretta Scott King's twentieth-anniversary address in 1994. The 1995 speech by A. Leon Higginbotham is included as an appendix. (shrink)