Social work and genetic testing: Ethical issues encountered in predictive testing for Huntington disease

Abstract

Recent advances in genetic technology, including the availability of presymptomatic genetic (ie. predictive) testing for untreatable late-onset conditions, have created a number of practice challenges for social workers. This article outlines the social worker's role in the internationally accepted protocol for provision of predictive testing for Huntington Disease (HD) and highlights some of the complex ethical, emotional and practical issues arising from predictive testing for HD and other similar disorders. For social workers in this field, attempts to deal with ethical dilemmas must rely both on the social work code of ethics and on reference to major principles of bioethics such as respect for autonomy, beneficence, non-maleficence and justice. It is acknowledged that in some situations involving a conflict of ethical principles there may be no ideal resolution.     

Local Experts in the Domestication of Information and Communication Technologies

Research into the adoption and use of new Information and Communication Technologies (ICTs) pays increasing attention to social context; however, the social fabric of contexts of use is often poorly theorized. This paper presents an investigation into the formation and operation of informal local networks of collaboration and knowledge exchange. It highlights the role of local experts in sustaining these informal networks and helping individuals and groups adopt and cope with new ICTs. The paper draws on a range of analytic traditions, including domestication and consumer research, to assess how local experts transfer knowledge, ideas of use and even new technologies across social networks and across the boundaries between home, work and education and other domains of life. The methodology deployed attempts to overcome the limitations of many studies of the adoption and diffusion of innovations in sample selection, especially the inclusion of non-adopters. It addresses the social dynamics of engagement with new technologies and proposes a move beyond a simple individualistic adopter/non-adopter model, with consequent implications for understanding digital inclusion and exclusion.     

The role of narrative in public relations ethics pedagogy

Competence in ethical decision making is one of the most important issues in the industry and practice of public relations, yet professionals entering the discipline overestimate their knowledge and skills related to ethical principles. This article features a pedagogical approach to strengthen ethics education in public relations through the use of collaborative student-professional ethics narratives. This technique attempts to move beyond a traditional case study approach and transcend traditional classroom boundaries through the development of narratives featuring real ethics situations experienced by public relations professionals. The project involved the development, implementation and assessment of the pedagogical approach that required students to interview local communication professionals (mostly in public relations) and to craft narratives that explore ethical dilemmas these professionals faced. Pre- and post-test surveys and group feedback helped explore the impact of narrative inquiry in helping students internalize ethical lessons.     

Who Controls Whom? History and Educational Technologies

Abstract

Considering the lack of research on the historisation of educational technologies, the current study attempts to fill this void. To do so, the following research question is posed: To what extent have educational technologies and local histories controlled one another? Data for this question came from a naturalistic enquiry into a university in the Saudi Arabian public sector. Having analysed documents, interviews, and observations by means of the grounded theory technique, two key themes emerged: local histories controlling educational technologies and educational technologies controlling local histories. The consideration of both themes brought forth a theoretical proposition — that there are political dynamics between educational technologies and micro histories, with one continuously directing and driving the other. The recommendation is therefore that policymakers, scholars, and commentators should be more cognisant of the political tensions between local histories and educational technologies.     

Taxonomic Chaos in the Confused Canadian Bioethics Industry: Apres Moi la Deluge

Abstract

This paper presents a conceptual analysis of a decade-old movement in Canada to purportedly raise ethical standards in research with human subjects, even though no systematic evidence has ever been presented either that there are serious ethical problems (especially in psychological research), or that the solutions imposed by the movement would improve the ethical situation, and not harm research's fundamental epistemological enterprise. The movement began with the activities of a committee from Canada's three major government research councils, the Tri-Council Committee (TCC). Like all ideological enterprises, it provided taxonomic chaos by, for example, confusing ethics with epistemology and feelings of discomfort concerning an area of investigation with intellectual expertise about that area. It also went beyond its American counterparts by calling its proposals a code of conduct rather than guidelines, and proposing that if a so-called research participant (i.e., a subject) did not like the investigator's hypotheses, she or he could withdraw “her” or “his” data. Even after the TCC and its various bureaucratic progeny retreated (though ambiguously) from these absurd positions, there has been a maintenance of such positions as the right and responsibility of IRBs to advise not only on the ethical issue of the treatment of subjects, but also on epistemological issues of research design. These issues require not only expertise in the requisite disciplines, but also an intimate familiarity with highly specialized sub-areas. In practical terms senior researchers may be able deal with the burgeoning North American bioethics industry and ignore the anti-epistemological and implicit principles according to which the industry operates. Younger researchers, who have no memory of how research used to be conducted, will succumb, and, in an epistemological sense, be “corrupted”. As the last phrase of my title suggests, senior researchers are currently acting like France's Louis XV.     

Traversing the swampy terrain of postmodern communities: Towards theoretical revisionings of community development

This paper engages with recent theoretical explorations of 'community' and situates community development within a futures framework which emphasizes creative possibilities for traversing the often contested, paradoxical terrain of postmodernism. Such an engagement is posited as important given that practice traditions such as community development have continued to rely predominantly on modernist reference points, which are increasingly showing signs of inadequacy in relation to contemporary issues and contexts. Some recent arguments have suggested that the material base of 'community' (and therefore of 'community practice') is under attack from both political and ideological processes such as globalization and postmodernism. Paradoxically, in social theory more generally, there is a simultaneous renewed interest in notions of 'community', and potentials for the development of new local sites of resistance in relation to these very same processes. Primarily a theoretical contribution to the creation of possibilities for re-visioning community development under conditions of globalization and postmodernity, this paper presents and explores three signposts which signal a range of challenges for the futures of community development: interpreting 'community' as a VERB--not a NOUN--and thereby bringing meaning, context and relationality to the centre; integrating the personal, the local and the global and thereby placing community development in a wholistic framework; and, accepting different ways of knowing, doing and being in community development, and thereby opening spaces for difference and mystery in praxis.     

National Politics,Neighborly Politics: How Trump’s Election Impacted a Black and White Detroit Community

Most research on right-wing populism has tried to explain the rise of populist movements and parties. While some have studied how neighborhood contexts and histories shape voting patterns, few have examined what happens locally after votes are cast. This article draws on three years of ethnographic research while the author lived in Brightmoor, a majority black, minority white poor depopulated Detroit neighborhood, to show how Trump’s politics shaped local expressions and experiences of racism. First, I show how white Trump supporters expressed distinct approaches to xenophobic ethnonationalism and racial politics. Trump’s surge empowered many to broadcast anti-immigrant sentiments, while they continued to put interactional and discursive work into not being seen as racist. Many also applied a “Trump lens” to local interactions and geographies and rendered minorities salient under Trump politics hypervisible. Second, I show how black residents equated xenophobic ethnonationalism with antiblack racism: seeing through pro-Trump whites’ attempts to separate these. Some also applied a new “Trump lens” to interactions and geographies, using the category of Trump voter and a sense of the voting map to anticipate and make sense of racist interactions. This article offers new insights into the local impacts of a national surge in right-wing populism.     

Plural processes,patterned connections

Plural globalizations refer to large-scale processes occurring today at an accelerated pace (due to information and communication technologies) and with extremely uneven effects (due to continuing and new inequalities). Conventional analytical and disciplinary frameworks can neither make adequate sense of, nor effectively politicize, these developments. The quantitatively large scales and qualitatively novel changes require new orientations. This essay draws on critical, interpretive, feminist perspectives to propose conceptual innovations and a cross-disciplinary framework for analyzing globalizations. The alternative framing moves beyond a narrow definition of economics to identify and integrate reproductive, productive, and virtual economies (understood in a Foucauldian sense as systemic sites through and across which power opcratcs). The new framing brings the concepts and practices of ‘social reproduction’, non-wage labor, and informalization into relation with the familiar but increasingly global, flexibilized, and service-oriented ‘productive economy’, as well as with the less familiar but increasingly consequential ‘virtual economy’ of financial markets, commodified information, and the exchange less of goods than of signs.     

PROXIMITY POLITICS

'Proximity politics' refers to a certain set of new political-cultural problems and issues that the globalization process confronts us with. Specifically it refers to the sort of engagements globalization entails as it draws us all closer together: both 'structurally', via the complex institutional interconnections of globalization, and 'phenomenologically' via the sort of experienced proximity that is provided in time-space bridging technologies - particularly communications and media technologies. The article contends that this 'relational closeness' - in a complex set of interactive modalities which do not abolish, but, in some contexts, actually intensify cultural differences - presents its own distinct order of politics. It attempts to map some of this emergent terrain, focusing on some recent debates about cosmopolitanism . Here it explores, for instance, problems of conflicting cultural-political principle thrown up by the structural impact of enforced proximity: principles of universalism and humanism vs the demands of cultural difference; ethical interventionism vs the principle of sovereignty; 'global governance' vs the claims of localism. It concludes, optimistically, by suggesting that the grosser fears of incompatibility of such principles may often be exaggerated and that there is, in fact, a good deal of room for (at least theoretical) manoeuvre on the emergent terrain of cosmopolitan politics.     

Ethics Anxiety

This case report, drawn from an American hospital, explores a phenomenon best described as ethics anxiety, a feeling of uncertainty as to what is ethically required or permitted, leading to clinical delay and confused decisions. In the specific clinical situation presented, the clinicians find themselves confronting, under severe time constraints, a complex, multidimensional problem with ethical and legal implications. The situation deteriorates as the clinicians find themselves unable to find what they perceive as the expert advice, either clinical or ethical, that would enable them to resolve the problem presented. In the discussion section of the case report, some attention is given to the role that the bioethics movement itself has had in creating these situations and undermining clinical decision‐making.     

Ethics and defense agency funding: some considerations

The author, an anthropologist working in a military defense science and technology funding agency, offers four guidelines for social scientists for evaluating the ethical problems in defense funding opportunities. These guidelines address what social scientists need to know in order to evaluate the ethical risks involved in accepting defense funding: (1) the need to understand the code of ethics of social science organizations and their limits in dealing with ethical problems of new technologies; (2) the need to understand the implications of working in “classified” contexts; (3) the need to understand the funding program's goals and objectives; (4) the need to develop an ethical imagination about technological advances and research and develop an appropriately supportive environment for promoting ethical behavior in the scientific community.     

Social shaping of technology in TA and HTA

The social shaping of technology (SST) approach to analysing technological development lends itself to an understanding of the relatively negotiated, heterogeneous, and local character of technologies, politicising the mediated nature of sociotechnical change. Here, conditions of actor engagement lie at the heart of analysing technology in social context—that is, the occasions, strategies, and scope of influence that are afforded different actors, by way of how particular problems come to be defined and resolved. In this paper we examine the framing of a number of concrete technology assessments (TAs) from Denmark, from the realms of general TA and health technology assessment (HTA). Our examination of the TA initiatives is directed towards the relatively open-ended and consequently explorative and qualitative stance that SST takes in characterising the boundaries between the technical and the social. The paper goes on to discuss a possible place of ethical inquiry in TA, based on the understanding of technological development that SST affords. In the reflexive approach to addressing technology’s relation to society, technology no longer maintains a universally reducible character in time or in social space. Through the possibility of analytically and practically opening up for otherwise seemingly locked actor-positions SST gives room for a more differentiated questioning and treatment of ethical issues in which technology may be implicated.     

Converging technologies – what future? The views of the science and policy communities

The contention and politicization of knowledge is nothing new but an inherent part of the scientific endeavour. What is new today is that this practice has been institutionalized and transformed into generally accepted practices for monitoring or regulating the production and/or dissemination of novel knowledge. These practices, which include Bioethics Councils or Committees, citizen dialogues or juries, ethical checklists, ex ante risk assessments or ELSA-type accompanying research, have grown exponentially over the last years and have slowly replaced traditional bottom-up forms of mobilization, even within social movements or civil society organizations. Converging technologies presents both old and new challenges for knowledge politics – in view of its uncertain development and inherent risks but also in view of its philosophical agenda and ethical implications. The article reflects on the future effect of discourse and knowledge politics on convergence technologies by considering developments in Austria     

Yearning for faraway places: the construction of migration desires among young and educated Bangladeshis in Dhaka

These days, the imagined destinations of ever more people, particularly in the ‘global South’, are not where they were born but elsewhere. Using a case study of educated (lower) middle-class youth in Dhaka, this paper attempts to demonstrate that for many ‘aspiring migrants’, the yearning for leaving is a metaphor for disappointment and disengagement rather than the first step towards transnational migration. Economic growth, rapid urbanisation and the increasing investment in education infest the emerging urban (lower) middle-class youth with new ‘modern’ lifestyle desires that cannot be fulfilled in their home country and generate a sense of disengagement with Bangladesh. The paper focuses in particular on how the – culturally embedded – imaginations of foreign places link up to personal (re-)evaluations of local lives. Nearly all informants explained how local socio-economic, political and existential insecurities made them yearn for ‘safe’ places where their dreams could be fulfilled.     

Genes Spell Danger: mental health service users/survivors, bioethics and control

The focus of this discussion is disability, culture and identities in relation to bioethics and mental health service users/survivors. Taking account of the inclusion of mental health service users/survivors within the administrative categories of disability, this article argues for debates about bioethics and disabled people to address and include the perspectives of psychiatric system survivors, and their concerns about psychiatry and bioethics. There is currently an increasing emphasis in both the media and government policy on the danger, threat and 'otherness' of mental health service users, and increasing provisions to restrict their civil and human rights. This development is international and has also tended to be racialised in its public presentation. While genetic approaches to physical and sensory impairment can be seen to be concerned with physical and bodily conformity, genetic approaches to madness and mental distress that are gaining increasing power and official legitimacy, are also closely associated with regulating diversity, divergence and dissent in thinking and perceptions. The aim of this article is raise and explore these issues, and highlight the common and different concerns for us as survivors and disabled people as a basis for encouraging alliances, shared understanding and common resistance.     

Society as an ethical system†

The idea of society on which the social sciences are premised is one of a structured pattern of interdependence and interaction that drives participation in a shared communication space and, thereby, a degree of common consciousness. These are also the preconditions for ethics to operate as an internal mode of self-understanding rather than an external imposition. Societies, in other words, are ethical systems. In order to understand in what sense societies, in the context of contemporary transformations, can still be thought of and analysed as ethical systems, the article focuses on inequality as both a practically important and normatively complex challenge – one that the international community, through the 2030 Agenda for Inclusive and Sustainable Development, has recognized to be one of its action priorities. These considerations further bear on the relation between the social sciences and the humanities, which is one important dimension of the future of the social sciences.     

Visiting ‘home’: Considering diasporic practices through assemblage dynamics

Visiting ‘home’ as a migrant may not always be about going home. Exploring a case where visiting is motivated by tourism as much as – or more than – migration, I argue for using assemblage as a set of ontological premises enables alternative appreciations of how practices of ‘visiting home’ evolve. Starting from a primacy of relationality and of malleable materialities, this perspective does not rely on migration-defined polarities to frame the spectrum of belonging in a homeland but allows for influences from many sources to interact and generate new formations that exceed the sum of their parts. Within this case, I analyse diasporic practices of visiting through three entwined dynamics: a contradictory sense of attachment to a place of ancestral origin, a desire for embodied leisure on vacation, and an instinct to insulate oneself from certain others. All three simultaneously contribute to the potency and perpetuation of diasporic visiting in Morocco.     

New Technology and the Human Services

Summary

Much has been written about the effects of new technology on the human services and about its possible implications for agencies, practitioners and service users. There is also an important and expanding literature on the implications of new technology for society as a whole, including much which addresses issues of social justice. Until recently, however, there have been only a few attempts to explore the range of issues specifically concerning the relationship between social justice and the human services. My main purpose here is to start to sketch out the parameters of the field of study relating new technology to social justice in the human services and to explore some of them in depth.

Three examples of different definitions of social justice are introduced, viz.; justice as equity; flexible individualised justice; and empowerment. Then normative and ethical considerations in relation to new technology in the human services are briefly reviewed. In the main body of this paper these issues are brought together in relation to three key areas (i) the manager/professional interface (ii) strategies for new technology implementation-top down or bottom up and (iii) the relationship between social worker and service user. Finally some conclusions are drawn about the possibilities for a synthesis between competing visions of social justice.     

Desiring security/securing desire: (Re)re‐thinking alterity in security discourse

Abstract

This essay rearticulates historical and contemporary security discourse as a politics of desire bound to a masculinist and racialized notion of Selfhood. The Persian Gulf War and the Canada/Spain Turbot War are presented as case studies which typify how the securing of desire through warfare proceeds from an idea of the desirous rival a Other. The essay counters Guardian and Lananian narratives of a desire which emanates from a sense of lack, and leads to violence, with Levinas's understanding of desire as central to, rather than disruptive of, an ethical relation with alterity.