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Biomedical subjects

Sarah Cunningham-Burley

Publications and source records attributed to Sarah Cunningham-Burley.

7 recordsLinked to original sources
PubMed2006

Tackling community concerns about commercialisation and genetic research: a modest interdisciplinary proposal.

In recent years, there has been a rise in the creation of DNA databases promising a range of health benefits to individuals and populations. This development has been accompanied by an interest in, and concern for the ethical, legal and social aspects of such collections. In terms of policy solutions, much of the focus of these debates has been on issues of consent, confidentiality and research governance. However, there are broader concerns, such as those associated with commercialisation, which cannot be adequately addressed by these foci. In this article, we focus on the health-wealth benefits that DNA databases promise by considering the views of 10 focus groups on Generation Scotland, Scotland's first national genetic database. As in previous studies, our qualitative research on public/s and stakeholders' views of DNA databases show the prospect of utilising donated samples and information derived for wealth-related ends (i.e. for private profit), irrespective of whether there is an associated health-related benefit, arouses considerable reaction. While health-wealth benefits are not mutually exclusive ideals, the tendency has been to cast 'public' benefits as exclusively health-related, while 'private' commercial benefits for funders and/or researchers are held out as a necessary pay-off. We argue for a less polarised approach that reconsiders what is meant by 'public benefits' and questions the exclusivity of commercial interests. We believe accommodation can be achieved via the mobilisation of a grass roots solution known as 'benefit-sharing' or a 'profit pay-off'. We propose a sociologically informed model that has a pragmatic, legal framework, which responds seriously to public concerns.

Commerce↗
PubMed2006

Constructing health and sickness in the context of motherhood and paid work.

Changes in the labour market, especially the rise in the employment of women (lone or partnered) with children, alongside an increased policy emphasis on work as a component of active citizenship for men and women, have stimulated the development of research examining the balance between work and home. Although sociologists have long been interested in the interface between the spheres of paid work and domestic life, understandings of the subjective experience of health and illness have tended to keep the domains of family and work separate. This paper addresses the construction of health and illness as operating at the interface between the worlds of work and home. Interviews were conducted with 30 mothers in paid work and having primary school aged children; the study was located in Edinburgh, Scotland. Through an analysis of the interview accounts, this paper examines respondents' experiences and constructions of health, sickness and wellbeing in themselves and in their children. Four areas are discussed: respondents' accounts of the effects of caring and providing on their own health; respondents' accounts of the influence of workplace relationships in the construction of sickness; respondents' accounts of negotiating absence for their children's sickness and how they made sense of and defined child sickness. We argue that managing sickness, itself an anticipated but unpredictable event, gives analytical purchase to understanding the values and practices that characterise the interrelationship between work and family life. The intersections of home and work operate powerfully in respondents' constructions of health and sickness, and the analysis demonstrates how these are played out in everyday life, at home and at work.

Child↗
PubMed2006

Public knowledge and public trust.

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.

Attitude↗
PubMed2003

Contrasting lives, contrasting views? Understandings of health inequalities from children in differing social circumstances.

Children's differing socio-economic, cultural and familial circumstances and experiences are part of the pathways implicated in health and illness in adulthood. However, in the existing, mainly survey based, work children's own voices tend to be absent and adult-defined data about health and illness accumulated. Little is known about the social and cultural processes, in children's very different childhoods, which underpin and ultimately constitute these epidemiological findings. This paper reports findings from a qualitative study examining the socio-economic and cultural contexts of children's lifestyles and the production of inequalities in health, carried out in a large Scottish city. Two rounds of semi-structured interviews, using a range of child-friendly techniques (photographs, drawings, vignettes), were carried out with 35 girls and boys aged 9-12 years living in two contrasting but contiguous areas, one relatively advantaged and one relatively disadvantaged. Thirty of their parents were also interviewed and community profiling and observational work undertaken. Children and parents described often starkly contrasting lives and opportunities, regularly involving material differences. However, children appeared to locate inequalities as much in relationships and social life as in material concerns; in this their direct experiences of relationships and unfairness were central to their making sense of inequality and its impact on health. Although children from both areas highlighted several different inequalities, including those related to material resources, they also spoke of the importance of control over their life world; of care and love particularly from parents; of friendship and acceptance by their peer group. Many children challenged straightforward causal explanations for future ill-health, privileging some explanations, such as psychological or lifestyle factors. The accounts of children from both areas displayed considerable resilience to and downplaying of the effects of both relationship and material inequalities; also showing how familial and personal challenges, such as bullying, divorce, learning difficulties, cut across structurally based differences.

Attitude to Health↗