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)

Who should decide about organ donation after death, the individual or the family? This paper examines why this practical question can be difficult to resolve. A comparison is made between standard decision‐making in medicine and decision‐making about organ donation. The questions are raised of the connection of the dead body to the person, and of who properly has autonomous control over the dead body. To understand the issues, an exploration of autonomy is needed, but at the same time this shows (...) that a resolution depends on addressing complex spiritual and cultural issues, and questions about the autonomy of the individual versus that of the group. (shrink)

Continence is a key moment of care that can tell us about the wider care of people living with dementia within acute hospital wards. The spotlight is currently on the quality of hospital care of older people across the UK, yet concerns persist about their poor treatment, neglect, abuse, and discrimination within this setting. Thus, within hospitals, the care of people living with dementia is both a welfare issue and a human rights issue. The challenge of continence care for people (...) living with dementia can be seen as the ‘canary in the coal mine’ for the unravelling of dignity within the acute setting. This paper draws on an ethnographic study within five hospitals in England and Wales, selected to represent a range of hospital types, geographies and socio‐economic catchments. Observational fieldwork was carried out over 154 days in acute hospitals known to admit large numbers of people living with dementia. This paper starts to fill the gap between theory and data by providing an in‐depth ethnographic analysis examining the ways in which treatment as a person is negotiated, achieved or threatened. We examine how the twin assaults on agency of a diagnosis of dementia and of incontinence threaten personhood. The acute threats to this patient group may then act to magnify perils to treatment as a person. Our findings suggest that personal dignity and the social construction of moral personhood are both threatened and maintained in such a setting. We show how empirical ethnographic data can lend weight to, and add detail to, theoretical accounts of moral personhood and dignity. (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)

Norms have been widely enacted in human and agent societies to regulate individuals’ actions. However, although legislators may have ethics in mind when establishing norms, moral values are only sometimes explicitly considered. This paper advances the state of the art by providing a method for selecting the norms to enact within a society that best aligns with the moral values of such a society. Our approach to aligning norms and values is grounded in the ethics literature. Specifically, from the literature’s (...) study of the relations between norms, actions, and values, we formally define how actions and values relate through the so-called value judgment function and how norms and values relate through the so-called norm promotion function. We show that both functions provide the means to compute value alignment for a set of norms. Moreover, we detail how to cast our decision-making problem as an optimisation problem: finding the norms that maximise value alignment. We also show how to solve our problem using off-the-shelf optimisation tools. Finally, we illustrate our approach with a specific case study on the European Value Study. (shrink)

We examine the concept of personhood in relation to people living with dementia and implications for the humanity of care, drawing on a body of ethnographic work. Much debate has searched for an adequate account of the person for these purposes. Broad contrasts can be made between accounts focusing on cognition and mental faculties, and accounts focusing on embodied and relational aspects of the person. Some have suggested the concept of the person is critical for good care; others suggest the (...) vexed debates mean that the concept should be abandoned. We argue instead that the competing accounts illuminate the very tensions in personhood which are manifest for all of us, but especially for people living with dementia, and argue that our account has explanatory power in shedding light on how precisely dehumanisation and constraints on agency may arise for people living with dementia, and for staff, within an institutional context. (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)

Self-driving cars don’t drink and medical AIs are never overtired. Given our obvious flaws, what can humans still do best?

Poor adherence to medication is a persistent problem in the practice of medicine, which gives rise to problems for individual patients, for the healthcare system as a whole, and in some cases, for third parties and for public health. There has been some progress in understanding the causes and solutions but much more work needs to be done. To develop the ethical responses to adherence, the problems need to be analysed more precisely. It is argued that, given that one pressing (...) concern is whether poorly adherent patients are being unfairly blamed or stigmatised, it is necessary to pay attention not just to the content of claims about adherence, but to the rhetoric of how these are presented. A necessity-concerns framework does much to advance understanding and ethics but may have certain pitfalls, and an approach based on micro-economic modelling may help to refine understandings of the position of the patient. It is also argued that a more sophisticated understanding of the ethical issues will be gained by recognising two problems: first, poor adherence to medications per se; second, poor knowledge about adherence to medications. These are related, but give rise to distinct ethical concerns. (shrink)

The author investigates how to produce realistic and workable ethical codes or regulations in this rapidly developing field to address the immediate and realistic longer-term issues facing us. She spells out the key ethical debates concisely, exposing all sides of the arguments, and addresses how codes of ethics or other regulations might feasibly be developed, looking for pitfalls and opportunities, drawing on lessons learned in other fields, and explaining key points of professional ethics. The book provides a useful resource for (...) those aiming to address the ethical challenges of AI research in meaningful and practical ways. (shrink)

ABSTRACT In this paper we compare philosophical and contemporary psychological approaches to mental handicap. Careful comparison between the disciplines reveals major differences and indicates that much further work is needed which would be fruitful for both sides. The two disciplines concentrate on different questions: philosophy tends to look chiefly at mental handicap in relation to issues of personhood and is not very clear about what mental handicap is; psychology on the other hand is much more specific about mental handicap, but (...) shows little concern with critically examining value issues. Our main intention is to explore the different ways in which mental handicap is defined and seen as a class. We conclude that class definition embodies a significant normative component and a large element of social construction. To ignore this and attempt to make normative judgements on the basis of class membership is thus highly problematic. Since within philosophy, these normative issues are often discussed in terms of personhood, this category is also critically examined and the conclusion is reached that it too has normative and social components which can lead to ethically dubious judgements being made about ‘the mentally handicapped’. (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)

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)

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)