Welfare and responsibility: a qualitative study of the demise of social morality and the rise of personal ethics in welfare discourses

Thesis submitted to the University of Luton for the degree of Doctor of PhilosophyMuch attention has been devoted in the social sciences to the reorganisation of the moral order of society (Smart, 1999). This reorganisation means that responsibility for welfare is now located with the individual. In spite of the salience given to privately held responsibility for welfare in social policy, little work has been carried out on the discourses underpinning this way of distributing responsibility (Finch and Mason, 1993, Duncan and Edwards, 1999, Rowlingson, 2002). Work on this issue is especially timely as New Labour continues the privatisation of responsibility for welfare in a way that, many people believe, neglects a moral dimension. Instead, New Labour favours a more ethical construction that exhorts the individual to do her duty by which they mean she should work for her own betterment and well-being (Levitas, 1998, Giddens, 1998, Jordan, 1998, Lund, 1999). This work begins by situating responsibility as a historically variable and discursive construction, uncovering how the understanding of responsibility changed as the problem focusing the minds of social engineers altered from one of poverty to one of security in the 1970s. While responsibility has only recently been identified as a particular issue for social policy academics (Roche, 1992, Dwyer, 1998, Dean et aI., 2004) philosophers and sociologists have paid close attention to responsibility over the past decade (Bauman, 1993, 1995, Habermas, 1990, 1995, Apel, 1989, 1996, Etzioni, 1995, Schmidtz, 1998, Goodin, 1998). Building on the issues raised by these authors, this work presents a qualitative study of government press releases, interviews with benefits recipients, members of the general public, welfare advisors and welfare benefits administrators to explore the rational structure of the discourses of responsibility for welfare. As a result, I develop the argument that while the reconfigured moral order promotes a private acceptance of responsibility for welfare, people still want a way of interpreting responsibility taking in a more public way

Community, rurality, and older people: critically comparing older people's experiences across different rural communities

Recent years have witnessed renewed academic interest in community as both an organizing concept and empirical case study. While previous work on community was largely limited to descriptive accounts of people's interactions in particular places, recent research has provided broader and more critical understandings of community by making connections between social imaginaries and social actions. This paper contributes to this work by applying a multilayered critical theory approach to the study of community. Starting from a general position that views community as a set of cognitively stabilized ideas and expectations, this approach compares discourses at different social levels of community in terms of how they unfold over time. The paper then applies this approach to experiences of community amongst older people in three rural places in England and Wales. Drawing on materials from interviews with older people and stakeholders, the paper explores the extent to which institutional discourses of community include different points of view and interpersonal discourses draw on reflective discourses. The empirical study highlights how community represents both a social system and a space in which individuals learn to live with others in the context of common practices and rule systems. It is also clear from the study that civil society and state actors need to develop new ideas, resources and practices to transform ageing from a demographic descriptor of rural places to an essential component of a shifting rural community discourse

Recontacting in medical genetics: the implications of a broadening knowledge base

The practice of recontacting patients has a long history in medicine but emerged as an issue in genetics as the rapid expansion of knowledge and of testing capacity raised questions about whether, when and how to recontact patients. Until recently, the debate on recontacting has focussed on theoretical concerns of experts. The publication of empirical research into the views of patients, clinicians, laboratories and services in a number of countries has changed this. These studies have filled out, and altered our view of, this issue. Whereas debates on the duty to recontact have explored all aspects of recontact practice, recent contributions have been developing a more nuanced view of recontacting. The result is a narrowing of the scope of the duty, so that a norm on recontacting focuses on the practice of reaching out to discharged patients. This brings into focus the importance of the consent conversation, the resource implications of this duty, and the role of the patient in recontacting

What’s so critical about it? An analysis of critique within different strands of critical gerontology

Shortly after emerging in the 1980s, critical gerontology became a recognised part of mainstream gerontology. Under the umbrella of ‘critical gerontology’ sits a number of orientations that draw attention to how ageing is socially located, while foregrounding the importance of values in ageing research. Nevertheless, as critical gerontology is not a clearly defined field or orientation, inconsistencies in the use of ‘critique’ among critical gerontologists has been fermenting internal tensions. In this paper we draw on recent debates on critique as a form of discourse that aims to criticise a deficient social order with the aim of helping to bring about a good society, to identify four discourses of critique. These include the discourses of immanent critique and of transcendent critique, critique that focuses on tensions between these two, and critique that builds on constructive combinations of immanence and transcendence. We add to these an extra level of depth by distinguishing how critical discourse is applied in each case. We use this framework to identify the discourses of critique deployed in variants of critical gerontology. Here, we distinguish political economic, lifecourse, humanistic and culturalist approaches within critical gerontology and assess how each of these applies a discourse of critique. We find that these gerontological perspectives draw on a variety of discourses of critique and make use of varying degrees of engagement with critical discourse. The paper concludes by discussing how critical gerontology may develop as a reflective forum commenting on and integrating insights offered by its own varieties of critique and connecting these with macro-social analyses

Genetic testing and family entanglements

The development of the ‘new genetics’ in the early 1990's opened up a new space which required some patients and families to understand and navigate genetic testing. The social science literature that has grown alongside the ‘new genetics’, now spanning more than thirty years, has continued to explore and question assumptions about attitudes and responses towards genetic technologies. In this article we highlight how individual experience of genetic disease and personal responses towards genetic technologies can only be understood by considering their context. We focus on the rich literature on family within sociology, science and technology studies, anthropology, and family studies, to explore the myriad ways in which family is implicated in the patient experience of genetic testing. We explore these connections by drawing on a set of interviews held with individuals who have undergone a predictive test for a genetic condition, including Huntington's Disease and breast cancer. Five themes were developed: family disclosure, family gatekeeping, going for testing, individual and collective communication practices, and receiving a negative test result. To conclude, we highlight how these connections might be considered through the lens of entanglement, explaining the complex mechanisms through which family and genetics are intimately entwined. Previous article in issu

Recontacting in clinical practice: an investigation of the views of healthcare professionals and clinical scientists in the United Kingdom

This article explores the views and experiences of healthcare professionals and clinical scientists in genetics about the existence of a duty and/or responsibility to recontact former patients when the genetic information relevant to their health, or that of family members, changes in a potentially important manner. It is based on N=30 semi-structured interviews guided by vignettes of recontacting scenarios. The sample included healthcare professionals in the United Kingdom from different medical specialties (clinical genetics, other ‘mainstream’ specialties now offering genetic testing), and scientists from regional genetics laboratories. While viewing recontacting as desirable under certain circumstances, most respondents expressed concerns about its feasibility within the current constraints of the National Health Service (NHS). The main barriers identified were insufficient resources (time, staff, and suitable IT infrastructures) and lack of clarity about role boundaries and responsibilities. All of these are further complicated by genetic testing being increasingly offered by mainstream specialties. Reaching a consensus about roles and responsibilities of clinical specialties with regard to recontacting former patients in the light of evolving genetic information, and about what resources and infrastructures would be needed, was generally seen as a pre-requisite to developing guidelines about recontact

Dimensions of responsibility in medical genetics: exploring the complexity of the “duty to recontact”

Discussion of a “duty to recontact” emerged as technological advances left professionals considering getting back in touch with patients they had seen in the past. While there has been much discussion of the duty to recontact as a matter of theory and ethics, there has been rather little empirically based analysis of what this “duty” consists of. Drawing on interviews with 34 professionals working in, or closely with, genetics services, this paper explores what the “duty to recontact” means for healthcare professionals involved in genetics. Using a discourse analytic framework, the paper identifies three system generated discourses on recontact (governance, legal and responsibilizing discourses) and three lifeworld discourses (situating recontact as a formal duty; more loosely as an obligation; and as a personal sense of responsibility). In summary, the paper shows that the “duty” to recontact involves a complex interplay of system responsibilities with professional duties, responsibilities and obligations

Recontact in clinical practice: a survey of clinical genetics services in the United Kingdom

Purpose: To ascertain whether and how recontacting occurs in the United Kingdom. Method: A Web-based survey was administered online between October 2014 and July 2015. A link to the survey was circulated via an e-mail invitation to the clinical leads of the United Kingdom’s 23 clinical genetics services, with follow-up with senior clinical genetics staff. Results: The majority of UK services reported that they recontact patients and their family members. However, recontacting generally occurs in an ad hoc fashion when an unplanned event causes clinicians to review a file (a “trigger”). There are no standardized recontacting practices in the United Kingdom. More than half of the services were unsure whether formalized recontacting systems should be implemented. Some suggested greater patient involvement in the process of recontacting. Conclusion: This research suggests that a thorough evaluation of the efficacy and sustainability of potential recontacting systems within the National Health Service would be necessary before deciding whether and how to implement such a service or to create guidelines on best-practice models.This article is freely available via Open Access. Click on the 'Additional Link' above to access the full-text from the publisher's site.Publishe

Recontacting patients in clinical genetics services: recommendations of the European Society of Human Genetics

Technological advances have increased the availability of genomic data in research and the clinic. If, over time, interpretation of the significance of the data changes, or new information becomes available, the question arises as to whether recontacting the patient and/or family is indicated. The Public and Professional Policy Committee of the European Society of Human Genetics (ESHG), together with research groups from the UK and the Netherlands, developed recommendations on recontacting which, after public consultation, have been endorsed by ESHG Board. In clinical genetics, recontacting for updating patients with new, clinically significant information related to their diagnosis or previous genetic testing may be justifiable and, where possible, desirable. Consensus about the type of information that should trigger recontacting converges around its clinical and personal utility. The organization of recontacting procedures and policies in current health care systems is challenging. It should be sustainable, commensurate with previously obtained consent, and a shared responsibility between healthcare providers, laboratories, patients, and other stakeholders. Optimal use of the limited clinical resources currently available is needed. Allocation of dedicated resources for recontacting should be considered. Finally, there is a need for more evidence, including economic and utility of information for people, to inform which strategies provide the most cost-effective use of healthcare resources for recontacting