Personhood as projection: the value of multiple conceptions of personhood for understanding the dehumanisation of people living with dementia.

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.

Pad cultures: An ethnography of continence care and its consequences for people living with dementia during a hospital admission.

BACKGROUND: There is little research examining how continence care is organised and delivered to people living with dementia across an acute hospital admission, despite the prevalence of this patient population and their vulnerability within these settings. OBJECTIVE: To explore how continence care is delivered to people living with dementia during an acute hospital admission. DESIGN: Ethnographic. SETTING(S): Acute medical units and wards within three hospitals across England and Wales. PARTICIPANTS: People living with dementia and ward staff (registered nurses and care assistants) on participating wards. METHODS: Ethnographic fieldwork collected over a period of 12 months (180 days of non-participant observation) focussing on the organisation and delivery of continence care to people living with dementia. Observations were supported with in situ ethnographic interviews (n = 562) with patients, visitors and staff within the six observed wards. Data collection and analysis drew on the theoretical sampling and constant comparison techniques of grounded theory. RESULTS: The findings comprised of five overall themes: (1) visibility of continence; (2) rationales of continence care; (3) containment and contagion; (4) consequences of continence care and (5) supporting continence. CONCLUSIONS: We introduce the term 'pad cultures' to refer to the established routine use of continence pads in the care of a wider group of people living with dementia (regardless of continence status and independence), with the rationale to provide safeguards, ensure containment and prevent 'accidents' or incontinent episodes. There was an expectation within acute wards that people living with dementia not only wear continence pads but that they also use them.

Presentation of the clothed self on the hospital ward: an ethnographic account of perceptual attention and implications for the personhood of people living with dementia.

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.

Using Signs and Symbols to Label Hospital Patients with a Dementia Diagnosis: Help or Hindrance to Care?

Signs and symbols may be used in attempts to direct attention to particular aspects of patient care and hence affect how the patient is seen. An ethnography within five hospitals across England and Wales explored how everyday technologies are enrolled on acute wards to drive attention to the existence, diagnosis, and needs of people living with dementia within their ageing population. We explore how signs and symbols as everyday "technologies of attention" both produce and maintain the invisibilities of people living with dementia and of the older population within those wards and bring about particular understandings of the classification of dementia. The use and reliance on signs and symbols to aid recognition of people living with dementia may inadvertently lead to misclassification and narrow attention onto particular aspects of bedside care and "symptoms," competing with a wider appreciation of the individual care needs of people living with dementia and restricting expertise of ward staff.

The canary in the coal mine: Continence care for people with dementia in acute hospital wards as a crisis of dehumanization.

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.

Consent forms in genomics: the difference between law and practice.

Consent forms are the principal method for obtaining informed consent from biomedical research participants. The significance of these forms is increasing as more secondary research is undertaken on existing research samples and information, and samples are deposited in biobanks accessible to many researchers. We reviewed a selection of consent forms used in European Genome-Wide Association Studies (GWAS) and identified four common elements that were found in every consent form. Our analysis showed that only two of the four most commonly found elements in our sample of informed consent forms were required in UK law. This raises questions about what should be put in informed consent forms for research participants. These findings could be beneficial for the formulation of participant information and consent documentation in the future studies.

Identifiability, genomics and U.K. data protection law.

Analyses of individuals' genomes--their entire DNA sequence--have increased knowledge about the links between genetics and disease. Anticipated advances in 'next generation' DNA-sequencing techniques will see the routine research use of whole genomes, rather than distinct parts, within the next few years. The scientific benefits of genomic research are, however, accompanied by legal and ethical concerns. Despite the assumption that genetic research data can and will be rendered anonymous, participants' identities can sometimes be elucidated, which could cause data protection legislation to apply. We undertake a timely reappraisal of these laws--particularly new penalties--and identifiability in genomic research.

Ethical implications of the use of whole genome methods in medical research.

The use of genome-wide association studies (GWAS) 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.

Planning for translational research in genomics.

Translation of research findings into clinical practice is an important aspect of medical progress. Even for the early stages of genomics, research aiming to deepen understandings of underlying mechanisms of disease, questions about the ways in which such research ultimately can be useful in medical treatment and public health are of key importance. Whilst some research data may not apparently lend themselves to immediate clinical benefit, being aware of the issues surrounding translation at an early stage can enhance the delivery of the research to the clinic if a medical application is later found. When simple steps are taken during initial project planning, the pathways towards the translation of genomic research findings can be managed to optimize long-term benefits to health. This piece discusses the key areas of collaboration agreements, distribution of revenues and recruitment and sample collection that are increasingly important to successful translational research in genomics.

The ethics and regulation of direct-to-consumer genetic testing.

A report of the workshop 'Direct-to-consumer genetic testing: ethical and regulatory issues', Oxford, UK, 21 May 2009.

Heart disease and social inequality: ethical issues in the aetiology, prevention and treatment of heart disease.

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.

Data sharing in genomics--re-shaping scientific practice.

Funding bodies have recently introduced a requirement that data sharing must be a consideration of all funding applications in genomics. As with all new developments this condition has had an impact on scientific practice, particularly in the area of publishing and in the conduct of research. We discuss the challenges that must be addressed if the full benefits of data sharing, as envisaged by funders, are to be realized.

Theoretical and practical issues in the definition of health: insights from Aboriginal Australia.

This paper discusses attempts to define health within a public policy arena and practical and conceptual difficulties that arise. An Australian Aboriginal definition of health is examined. Although there are certain difficulties of translation, this definition is prominent in current Australian health policy and discourse about health. The definition can be seen as broadly holistic in comparison to other holistic definitions such as that of the World Health Organization. The nature of this holism and its grounding within the context of Aboriginal Australia is discussed. In particular, its implications for the phenomenon of medicalization, which may be associated with a holistic notion of health, is critically explored, as is the link of notions of health to culture and the question of the possibility of a universal definition of health. The question of to what extent a definition of health is inspirational or operational is also raised.

Adolescent carrier testing in practice: the impact of legal rulings and problems with "gillick competence".

Testing for carrier status for various genetic conditions often takes place during adolescence or young adulthood. This paper aims to add to the discussion of when is the best time to test through an examination of how the law on medical treatment of children appears to be used in practice and how a careful examination of legal rulings might shed light upon best practice in this area. Our focus is on the Gillick ruling (Gillick v West Norfolk and Wisbech Area Health Authority 1986), which dealt with consent and confidentiality with respect to the provision of contraceptive advice to under 16-year-olds, but which has become a general benchmark for consent to medical treatment within UK law. In addition, we draw upon data from a qualitative research study which indicates potential problems with certain practices in respect of the influence of the Gillick ruling on carrier testing procedures. We present evidence that in at least some instances, adolescents have reduced capacity to grasp fully the implications of carrier test results. In the light of our findings we make recommendations for practice concerning the testing of children and young persons.

Communicating genetic information in the family: enriching the debate through the notion of integrity.

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.