Diversity and uniformity in genetic responsibility: moral attitudes of patients, relatives and lay people in Germany and Israel

The professional and institutional responsibility for handling genetic knowledge is well discussed; less attention has been paid to how lay people and particularly people who are affected by genetic diseases perceive and frame such responsibilities. In this exploratory study we qualitatively examine the attitudes of lay people, patients and relatives of patients in Germany and Israel towards genetic testing. These attitudes are further examined in the national context of Germany and Israel, which represent opposite regulatory approaches and bioethical debates concerning genetic testing. Three major themes of responsibility emerged from the inter-group and cross-cultural comparison: self-responsibility, responsibility for kin, and responsibility of society towards its members. National contrast was apparent in the moral reasoning of lay respondents concerning, for example, the right not to know versus the duty to know (self-responsibility) and the moral conflict concerning informing kin versus the moral duty to inform (responsibility for kin). Attitudes of respondents affected by genetic diseases were, however, rather similar in both countries. We conclude by discussing how moral discourses of responsibility are embedded within cultural (national, religious) as well as phenomenological (being affected) narratives, and the role of public engagement in bioethical discourse

The advent of the personal pill: Value conflicts in pharmacogenetics and pharmacogenomics

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Dignity under threat? A study of the experiences of older people in the United Kingdom

Theoretical accounts have offered a general understanding of the social significance and importance of dignity and suggest that older age may threaten dignity by structuring and limiting the opportunities for participation and/or social recognition. Micro-sociological research has shown how older people negotiate their identity, in the face of its erosion by the aging body and disability and the domination of health and social care workers. These theoretical approaches inform the study presented here, which explores the meaning and experience of dignity for older people in their daily lives. Older people's accounts were elicited through a series of focus groups with participants living in England and Wales. Participants were selected according to predefined criteria to represent a range of different socio-economic and ethnic backgrounds, levels of fitness, and home circumstances. Personal identity and autonomy were the aspects of dignity most meaningful to the participants, and discussions tended to focus mainly on when personal identity and autonomy were threatened or violated in the context of the provision of health and social care. The authors discuss the extent to which older people's discourse on dignity resonates with the theoretical discourse

Dignity in the care of older people: a review of the theoretical and empirical literature

BACKGROUND: Dignity has become a central concern in UK health policy in relation to older and vulnerable people. The empirical and theoretical literature relating to dignity is extensive and as likely to confound and confuse as to clarify the meaning of dignity for nurses in practice. The aim of this paper is critically to examine the literature and to address the following questions: What does dignity mean? What promotes and diminishes dignity? And how might dignity be operationalised in the care of older people?This paper critically reviews the theoretical and empirical literature relating to dignity and clarifies the meaning and implications of dignity in relation to the care of older people. If nurses are to provide dignified care clarification is an essential first step. METHODS: This is a review article, critically examining papers reporting theoretical perspectives and empirical studies relating to dignity. The following databases were searched: Assia, BHI, CINAHL, Social Services Abstracts, IBSS, Web of Knowledge Social Sciences Citation Index and Arts & Humanities Citation Index and location of books a chapters in philosophy literature. An analytical approach was adopted to the publications reviewed, focusing on the objectives of the review. RESULTS AND DISCUSSION: We review a range of theoretical and empirical accounts of dignity and identify key dignity promoting factors evident in the literature, including staff attitudes and behaviour; environment; culture of care; and the performance of specific care activities. Although there is scope to learn more about cultural aspects of dignity we know a good deal about dignity in care in general terms. CONCLUSION: We argue that what is required is to provide sufficient support and education to help nurses understand dignity and adequate resources to operationalise dignity in their everyday practice. Using the themes identified from our review we offer proposals for the direction of future research