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This article critically explores the distribution of rights and responsibilities associated with recent developments in genetic testing and DNA donation. The author identifies two key discourses in various accounts of genetics in the clinical and policy domains: patients' rights to informed choice and the public's right to involvement in policy decisions. However, other discourses among professionals, patients and members of the public around responsibilities for supporting genetic research and testing and managing their social implications are also present. The author goes on to argue that these discourses undermine the case for a dramatic difference between past eugenics and present genetics, as the prevention of genetic disease remains of paramount importance. This suggests that `new genetic citizenship' is not so new after all.

In this paper I explore the construction of a clinical continuum between a genetic disease, cystic fibrosis (CF), and male infertility. I provide a brief outline of the history of cystic fibrosis and its association with male infertility, before examining the contention that a growing number of cases of male infertility are a form of CF. I explore various processes involved in the construction of the clinical continuum between CF and male infertility: first, the identification of genetic mutations for male infertility, which includes the creation of unidentified mutations and the redefinition of polymorphisms or variations in the genetic code as mutations; second, the establishment of a common principal defect for the two entities; third, the identification of other symptoms and positive tests for CF in infertile males; and, fourth, the mutual development of genetic research into CF and infertility and the genetic surveillance of infertile couples. Throughout I highlight the treatment of uncertainties and reductionism in these processes, particularly in practitioners' characterization of mutations, explanations of the basic defect, identification of other symptoms and treatment of test results. I also examine the various ways in which research and clinical practices inter-relate. I end by considering the implications of this case study for the social analysis of genetics more generally.

AbstractRecent discussions about disciplinarity and interdisciplinarity in the social sciences have tended to map and critique methods, theories and approaches to knowledge production, but spend less time exploring the ways in which institutional constraints and personal trajectories produce different kinds of disciplinarity and interdisciplinarity. In this paper we present findings on interdisciplinarity from UK research undertaken as part of an EC project on knowledge, gender and institutions. The research involved a small survey (n = 14), in‐depth interviews (n = 5), two focus groups (n = 7) and observation of social scientists in one university department between June 2006 and April 2007. We reflect on the unwillingness of social scientists to confront the conditions of our academic labour in an account of our difficulties with gaining access and respondents in this study, before moving on to consider some of the different ways in which interdisciplinarity and disciplinary commitments were related to particular forms of scientific and symbolic capital. We go on to discuss this in relation to the autonomy of academic teaching‐and‐research staff compared to contract researchers, and consider the implications of our findings for the future of interdisciplinarity and the social sciences.

Over the past thirty years there has been a significant turn towards practice and away from institutions in sociological frameworks for understanding science. This new emphasis on studying 'science in action' ( LATOUR 1987 ) and 'epistemic cultures' ( KNORR CETINA 1999 ) has not been shared by academic and policy literatures on the problem of women and science, which have focused on the marginalisation and under-representation of women in science careers and academic institutions. In this paper we draw on elements of both these approaches to think about epistemic communities as simultaneously practical and organisational. We argue that an understanding of organisational structures is missing in science studies, and that studies of the under-representation of women lack attention to the detail of how scientific work is done in practice. Both are necessary to understand the gendering of science work. Our arguments are based on findings of a qualitative study of bioscience researchers in a British university. Conducted as part of a European project on knowledge production, institutions and gender the UK study involved interviews, focus groups and participant observation in two laboratories. Drawing on extracts from our data we look first at laboratories as relatively unhierarchical communities of practice. We go on to show the ways in which institutional forces, particularly contractual insecurity and the linear career, work to reproduce patterns of gendered inequality. Finally, we analyse how these patterns shape the gendered value and performance of 'housekeeping work' in the laboratory.

This critical examination of theories of reflexive modernity with respect to the new human genetics draws on a range of empirical studies and conceptual critiques. In it we explore the ways in which genetic knowledge and testing technologies offer new choices, construct new risks and generate public and professional ambivalence. We contrast this with the processes of ordering, reduction and control suffusing these developments. We argue that reductionism and determinism continue to infuse genetic theories and methods, that scientific and social progress are collapsed anew, and that certitude and surveillance remain powerful guiding principles. Within this context, the reflexive potential of individual choice, personal responsibility and risk estimation is seriously undermined. Indeed, in the case of the new human genetics, it seems that reflexive modernisation promotes, rather than curtails, a new modern/counter-modern eugenics. This occurs through the privatisation of lay ambivalence and professionals' successful institutional reflexivity. The paper concludes with a consideration of the implications of our reflections for sociology and participatory democracy more broadly.

Public dialogue about science, technology and medicine is an established part of the activities of a range of charities, private corporations, governmental departments and scientific institutions. However, the extent to which these activities challenge or bridge the lay—expert divide is questionable. Expertise is contested, by the public and the community of scholars who study and/or facilitate public engagement. In this paper, we explore the dynamics of expertise and their implications for the lay—expert divide at a series of public events about the new genetics. We examine participants' claims to expertise and consider how this relates to their claims to credibility and legitimacy and the way in which these events unfolded. Using a combination of ethnographic and discursive analysis, we found that participants supplemented technical expertise with other expert and lay perspectives. We can also link participants' claims to expertise to their generally positive appraisal of genetic research and services. The colonization of lay positions by expert speakers and the hybrid positioning of lay—experts was characteristic of the consensus and conservatism that emerged. This leads us to conclude that public engagement activities will not challenge the dominance of technical expertise in decision-making about science, technology and medicine without more explicit and reflexive problematization of the dynamics of expertise therein.

This article explores the accounts of eugenics made by a small but important group of British scientists and clinicians working on the new genetics as applied to human health. These scientists and clinicians used special rhetorical strategies for distancing the new genetics from eugenics and to sustain their professional autonomy. They drew a number of boundaries or distinctions between eugenics and their own field, describing eugenics as politically distorted "bad science, " as being technically unfeasible, a feature of totalitarian regimes, the abuse of neutral knowledge, and as the manipulation of the population's gene pool as opposed to diagnosing and treating individuals with genetic conditions. Their more sophisticated defense strategies invoked the importance of individual choice and the relationship between nature and nurture. The article highlights the ambiguities and difficulties in professionals' use of this rhetoric, drawing on historical and sociological analyses of eugenics, genetics, and medical science and technology more broadly.

AbstractDuring the COVID‐19 pandemic media narratives of solidarity often cast nations like the UK as if at war, while acclaiming health‐care workers as heroic and beloved. However, this solidarity was often fragile and fleeting, as concerns and criticism about workers, citizens and services also circulated. In this article we explore these dynamics of solidarity in more depth, analysing framings of cancer patient suffering, private and public provision of health care in news media during the early part of the COVID‐19 pandemic. We explore how cancer patients were positioned as victims of failure and abandonment by the state and its health‐care providers, and how the private health‐care system was presented in a saviour role. We conclude by reflecting on the implications of new media's alignment of appeals to solidarity with highly individualised forms of care and the consequences for state‐based services founded on principles of solidarity.

This article offers an analysis of 28 lay accounts of the experience of living with either food allergy or food intolerance in England. We structure the presentation of our data in terms of Mike Bury's three types of narrative form — contingent, moral and core. We suggest that people with food allergies at risk of acute, severe and potentially fatal symptoms on exposure to allergens find their condition to be less socially problematic than do those who suffer intolerances to certain foods, which can result in chronic, but not life-threatening, symptoms. Drawing on the extant literatures on the sociology of food and eating we propose a conceptualization in relation to notions of identity, anomie and communality that attempts to make sense of this finding.

Laboratory practitioners working in oncology are increasingly involved in implementing genomic medicine, operating at the intersection of the laboratory and the clinic. This includes molecular diagnostic work and molecular testing to direct entry into molecular-based clinical trials and treatment decision-making based on molecular profiling. In this article, we draw on qualitative interviews with laboratory practitioners in the United Kingdom to explore the role of laboratory work in genomic cancer medicine, focusing on the handling of patient tissue and making of potentiality to guide patients' present and future care. With an increase in molecular testing to inform standard care and clinical trial participation, we show how practitioners "potentialized" the tissue by carefully negotiating what to test, how to test, and when. This included maximizing and managing small amounts of tissue in anticipation of possible future patient care. Tissue archives also took on new meaning, and potentiality, which practitioners negotiated alongside patient care. Potentiality was key to generating the "big" future of genomic medicine and also involved care work where the tissue emerged as an extension of the patient, as a form of "material patienthood," to secure present and future care for patients through their involvement in genomic medicine.