Suchergebnisse

As health care applications derived from human genetics research are likely to move increasingly from 'clinic to community', there is growing interest not just in how patients understand and take up health-related genetic information but also in the views of the wider population, as well as a range of professional groups. In this paper, issues relating public knowledge and public trust are raised and discussed in an attempt to move forward debates about public involvement in genomic research and the role of sociologists within interdisciplinary teams. As the field of public understanding of science has developed, we have seen a shift from a focus on the lack of scientific literacy as problem to a recognition of the range of different knowledges that people have and use as they confront science and technology in their everyday lives. As a mood for dialogue pervades many institutions in their relations with 'publics', attention must now be paid to the way in which knowledge and expertise is expressed, heard and acted upon in dialogic encounters. There is increasing concern about public trust in science and calls to increase public confidence, particularly through more open engagement with a range of publics. However, lack of trust or loss of confidence may be constructed as problems rather than reflecting empirical reality, where more complex relationships and attitudes prevail. Lack of trust is often privatized, deeply rooted in lived experience and routinely managed. Trust relations are generally characterized by ambivalence, uncertainty and risk, and are always provisional. Drawing on selected literature and empirical research to review and illustrate this field, this paper argues that scepticism or ambivalence on the part of publics are not necessarily problems to be overcome in the interest of scientific progress, but rather should be mobilized to enhance open and public debates about the nature and direction of genomics research, medicine, and the related social and ethical issues. Just as there can be no resolute expression of public knowledge or public opinion, it is unlikely that there is a resolute expression of public trust in genomics. However, ambivalence and scepticism can be harnessed as powerful resource for change, whether through the mobilization of public knowledges or the development of greater reflexivity within scientific institutions. This demands a sharing of power and greater public involvement in the early stages of policy formation and scientific and medical agenda setting.

Drawing on data from a study of grandparenthood, this paper examines the nature of projected action, and the value of the concept of `rule' in both lay and sociological reasoning.The way in which people becoming grandparents for the first time defined grandparenthood is analysed through an examination of their formulations of appropriate grandparenting behaviour, as elicited in qualitative interviews. Although much was left ill-defined, grandparental involvement with the younger generations was accounted as being bounded by certain rules or guidelines which served to restrict grandparental action, and set limits to their intended behaviour.Three main restrictions on potential action were noted: `not-interfering', `sharing', and `not-spoiling'; the grandparents' elaborations of these will be examined. They seemed to express underlying `rules' which represented a way of speaking about or making sense of a future role. However, the failure of these `rules' to perform as clear cut prescriptions for behaviour enabled the grandparents to develop a role for themselves.Nations of appropriate grandparenting behaviour were found to be based on personal experience or commonsense knowledge. Drawing on their knowledge of family life, the grandparents were able to give themselves a positive but nonetheless non-interfering role.The personal characteristics and expectations of the grandparents, as people able and willing to spend time with their families, seemed to create an inherent contradiction in their projections of a grandparental role. Yet it was such different relevances which facilitated the production of a potentially satisfactory set of practices for `doing grandparenting'.

Denzin has noted that the interview is a 'conversational production, anticipated in the investigator's mind and imagination, but realised only in the world of conversational interaction' (1970:188). This article aims to examine the processes involved in the production of a sociological interview especially, although not exclusively, at the level of conversational interaction. By focussing attention on to one specific piece of empirical work,(1) I hope to provide a balance to other more general appraisals of the interview method (eg. Richardson, 1965; Denzin, 1970; Brenner, 1978). The article attempts to further our understanding of the contextual production of sociological data.

The problems involved in assessing the meaning and significance of becoming a grandfather are tied to the issue of the contextual production of sociological data. Grandfatherhood is analysed by taking into account the way in which the grandfathers contributed in research interviews. Since they did not speak readily about grandfatherhood, it becomes difficult for an investigator to describe its features. An assessment of grandfathers' roles showed that indeed they had little to do during the early months of grandfatherhood, thus reinforcing their reticent role in the interview setting. Yet, grandfatherhood was still held to be something significant, and the respondents, in this study, provided explanations of why it was difficult to understand or assess this. By focusing on such respondent accounts the problems of gender and method in sociological research can be more clearly understood.

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.

The NHS Manifesto published in The Lancet by Nigel Crisp and colleagues (Dec 10, 2016, e24)1 is a broadly compelling one, and yet it mirrors an error made by National Health Service (NHS) England's Five Year Forward View2 in calling for a major transformation of the UK's largest public service without acknowledging the importance of public engagement in those plans. To be sure, Crisp and colleagues1 call for services to be made patient-centred, and for patients and carers to be engaged "in decision making and care". But the overwhelming role outlined for the wider public and communities is as a provider of the informal care required to shrink NHS services. The absence of an empowered public role in this manifesto is problematic because the continued "great national coming together" of the NHS depends upon public support. This support should be nurtured through careful, genuine public engagement to build collective ownership of the future shape of the NHS. Instead, Crisp and colleagues present a ready-made blueprint for a future NHS, with transformation to be accelerated and improvement to be driven forward by central government "plan[ning] at scale", rather than a plan developed in partnership with the very public the NHS serves.

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.