The use of genome-wide association studies in medical research and the increased ability to share data give a new twist to some of the perennial ethical issues associated with genomic research. GWAS create particular challenges because they produce fine, detailed, genotype information at high resolution, and the results of more focused studies can potentially be used to determine genetic variation for a wide range of conditions and traits. The information from a GWA scan is derived from DNA that is a (...) powerful personal identifier, and can provide information not just on the individual, but also on the individual's relatives, related groups, and populations. Furthermore, it creates large amounts of individual-specific digital information that is easy to share across international borders. This paper provides an overview of some of the key ethical issues around GWAS: consent, feedback of results, privacy, and the governance of research. Many of the questions that lie ahead of us in terms of the next generation sequencing methods will have been foreshadowed by GWAS and the debates around ethical and policy issues that these have created. (shrink)
The Limits of Medical Paternalism defines and morally assesses paternalistic interventions, especially in the context of modern medicine and health care, particular emphasis is given to the analysis of the conceptual background of the paternalism issue. In this book an anti-paternalistic view is presented and defended.
The prevention, treatment and management of disease are closely linked to how the causes of a particular disease are explained. For multi-factorial conditions, the causal explanations are inevitably complex and competing models may exist to explain the same condition. Selecting one particular causal explanation over another will carry practical and ethical consequences that are acutely relevant for health policy. In this paper our focus is two-fold; the different models of causal explanation that are put forward within current scientific literature for (...) the high and rising prevalence of the common complex conditions of coronary artery disease and type 2 diabetes mellitus ; and how these explanations are taken up within national health policy guidelines. We examine the causal explanations for these two conditions through a systematic database search of current scientific literature. By identifying different causal explanations we propose a three-tier taxonomy of the most prominent models of explanations: evolutionary, lifecourse, and lifestyle and environment. We elaborate this taxonomy with a micro-level thematic analysis to illustrate how some explanations are semantically and rhetorically foregrounded over others. We then investigate the uptake of the scientific causal explanations in health policy documents with regard to the prevention and management recommendations of current National Service Frameworks for CAD and T2D. Our findings indicate a lack of congruence between the complexity and frequent overlap of causal explanations evident in the scientific literature and the predominant focus on lifestyle recommendations found in the mainstream health policy documents. (shrink)
Heart disease is a complex condition that is a leading cause of death worldwide. It is often seen as a disease of affluence, yet is strongly associated with a gradient in socio-economic status. Its highly complex causality means that many different facets of social and economic life are implicated in its aetiology, including factors such as workplace hierarchy and agricultural policy, together with other well-known factors such as what passes for individual 'lifestyle'. The very untangling of causes for heart disease (...) thus inevitably raises social, moral and political issues. These include the proper role of the individual and of larger social forces in its aetiology, prevention and treatment. The construction of risk factors for heart disease likewise is enmeshed with questions of distributive justice in the responsible targeting of those at risk for heart disease, a debate which has received much overt attention in the medical literature, but less attention within the ethical literature. Strategies for addressing a condition of such complex causality can be highly diverse, from pharmaceutical to social interventions, and value issues attach to the choice and presentation of such strategies. For example, prevention strategies may raise complex issues of responsibility and of judgements of what it is to 'live well'. Further ethical debate on this highly political disease would be welcome. (shrink)
Non-therapeutic genetic testing in childhood presents a “myriad of ethical questions”; questions which are discussed and resolved in professional policy and position statements. In this paper we consider an underdiscussed but strongly influential feature of policy-making, the role of selective case and exemplar in the production of general recommendations. Our analysis, in the tradition of rhetoric and argumentation, examines the predominate use of three particular disease exemplar to argue for or against particular genetic tests. We discuss the influence these choices (...) have on the type and strength of subsequent recommendations. We argue that there are lessons to be drawn about how genetic diseases are conceptualised and we caution against the geneticisation of medical policy making. (shrink)
Genetic information about one individual often has medical and reproductive implications for that individual’s relatives. There is a debate about whether policy on transmitting genetic information within the family should change to reflect this shared aspect of genetic information. Even if laws on medical confidentiality remain unchanged, there still remains the question of professional practice and whether, to what extent and by what means professionals should encourage disclosure within a family. The debate so far has tended to focus on who (...) has a right to genetic information, or has a right to decline genetic information, frequently drawing on the notion of individual autonomy. There are significant divergences within this debate, and difficulties with the use of autonomy in this context have been noted. This paper draws on theoretical considerations as well as on qualitative empirical data to show that shifting from talk of autonomy to talk of integrity will greatly enrich and illuminate the issues. It becomes possible to gain deeper insights into the ethical significance of the timing and the manner of such communication, the character of recipients of knowledge, and the nuanced nature of communication and different levels of understanding within a family. (shrink)
This study contributes to our understanding of the ‘medical gaze’ and its impact on the ways in which people living with dementia experience care during a hospital admission. Visual perception has a powerful effect on our emotional and moral reactions to others. One aspect of how we perceive and respond to others is through clothing, which relates strongly to class and social position. Our focus is on exploring the ways in which patient clothing may affect the perceptions and response of (...) others, and self-perception and resulting behaviour. We draw on ethnographic research within acute hospital wards in five hospitals across England and Wales, examining the everyday organisation and delivery of care to people living with dementia. People living with dementia are a significant population who have poor experiences and outcomes of care within the acute setting. Our data suggest that the twin aspects of clothing and appearance—of self-perception, and of perception by others—may be especially important in the fast-paced context of an acute ward environment, where patients living with dementia may be struggling with the impacts of an additional acute medical condition within in a highly timetabled, regimented, and unfamiliar environment of the ward, and where staff perceptions of them may feed into clinical assessments of their condition and subsequent treatment and discharge pathways. (shrink)
Genetic and other biotechnologies are starting to impact significantly upon society and individuals within it. Rose and Novas draw on an analysis of many patient groups to sketch out the broad notion of biocitizenship as a device for describing how the empowered and informed individual, group or network can engage with bioscience. In this paper, we examine critically the notion of biocitizenship, drawing on both sociological fieldwork that grounds the debate in the views of a large and varied group of (...) concerned actors. Using work within green politics, we identify shortcomings in the concept of biocitizenship as it has so far been explicated. The value assumptions lying behind an account of biocitizenship, and its tendency to see issues through a reductive lens, are examined. Alternative views of values and goals, which may undermine any alleged rights and duties, are explored using interviews and other ethnographic data that illustrates the complexity of the terrain. The reductive lens of biocitizenship is explored through contrast with the wider scope of concerns emanating from various sources, including many within green politics. If such complexities are not recognised, there is a danger that a concept of biocitizenship may serve to create and amplify inequalities. Problems with identity issues are key: the construction of identity is complex and many groups are explicitly rejecting the ‘biological’ label. We discuss the multiple relations of citizens with the biotech and pharmaceutical industries. Arguably, existing inequalities in power relationships, exploitation, commodification and ownership patterns are being perpetuated in novel ways through the new biosciences. We pose the question of whether it is possible to construct a concept of biocitizenship that overcomes these problems. (shrink)