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.     

The social practice of sustainable agriculture under audit discipline: Initial insights from the ARGOS project in New Zealand

One of the most interesting recent developments in global agri-food systems has been the rapid emergence and elaboration of market audit systems claiming environmental qualities or sustainability. In New Zealand, as a strongly export-oriented, high-value food producer, these environmental market audit systems have emerged as an important pathway for producers to potentially move towards more sustainable production. There have, however, been only sporadic and fractured attempts to study the emerging social practice of sustainable agriculture - particularly in terms of the emergence of new audit disciplines in farming. The ARGOS project in New Zealand was established in 2003 as a longitudinal matched panel study of over 100 farms and orchards using different market audit systems (e.g., organic, integrated or GLOBALG.A.P.). This article reports on the results of social research into the social practice of sustainable agriculture in farm households within the ARGOS projects between 2003 and 2009. Results drawn from multiple social research instruments deployed over six years provide an unparalleled level of empirical data on the social practice of sustainable agriculture under audit disciplines. Using 12 criteria identified in prior literature as contributing a significant social dynamic around sustainable agriculture practices in other contexts, the analysis demonstrated that 9 of these 12 dimensions did demonstrate differences in social practices emerging between (or co-constituting) organic, integrated, or conventional audit disciplines. These differences clustered into three main areas: 1) social and learning/knowledge networks and expertise, 2) key elements of farmer subjectivity - particularly in relation to subjective positioning towards the environment and nature, and 3) the role and importance of environmental dynamics within farm management practices and systems. The findings of the project provide a strong challenge to some older framings of the social practice of sustainable agriculture: particularly those that rely on paradigm-driven evaluation of social motivations, strong determinism of sustainable practice driven by coherent farmer identity, or deploying overly categorical interpretations of what it means to be ’organic’ or ’conventional’. The complex patterning of the ARGOS data can only be understood if the social practice of organic, integrated or (even more loosely) conventional production is understood as being co-produced by four dynamics: subjectivity/identity, audit disciplines, industry cultures/structure and time. This reframing of how we might research the social practice of sustainable agriculture opens up important new opportunities for understanding the emergence and impact of new audit disciplines in agriculture.     

Structural Problems in the Formation and Function of Blended Families

This paper outlines a structural family therapy analysis of the problems that occur in the formation and functioning of blended families. The difference between blended families and other types of family is discussed and an attempt is made to differentiate blended families from each other. Common structural problems in blended families are described with case study examples. Reference is made to the part that access and custody disputes play in the problems of the blended family and some suggestions are made regarding therapy with these families.     

The gender of bruising: A critical literature review on gender in boxing

This article provides a critical review of the scholarship on gender in boxing since the formal recognition of women's boxing internationally in 1994. The article is divided into three parts, each addressing a different aspect of the relationship between gender and boxing. The first part discusses the beginnings of boxing scholarship that mostly focussed on men and masculinity, the second part explores the research on boxing since the inclusion of female boxing in international competitions and examines organizational aspects of boxing, and the last part outlines the scholarship that explores gender identities in boxing. The review is based on qualitative textual analysis and attempts to identify gaps in the scholarship, providing suggestions for future research directions. Overall, the article argues that while the scholarship on gender in boxing is saturated, there are still a few areas that would benefit from further research. These are studies on the relationship between volunteering, refereeing, heterosexuality, and gender in boxing.     

WORKING IN “HIGH-TECH”: RESEARCH ISSUES AND OPPORTUNITIES FOR THE INDUSTRIAL SOCIOLOGIST*

This article outlines some issues concerning the organization of work in the new “high technology” industries. High technology industries are defined as industries involved in the manufacture of electronic information processing machinery and related products. Two central tensions are key to understanding work in the new high technology industries. First, a limited reduction in the prevalance of repetitive tasks is counterbalanced by increasing isolation of workers due to semi-automated production processes. This tension may be mediated by intentional efforts on the part of unions and/or management to recreate meaningful work environments. Second, potential empowerment arising from the creation of new job related skills is frequently offset by continuing high unemployment in the broader labor market that is to some extent a result of the very success of high technology production tcchniques. Difficulties in realizing potential aspects of empowerment may be further amplified by large-scale utilization of female and minority labor in high technology industries in the West and Southwest. Research techniques of addressing these issues are also surveyed and evaluated.     

Honesty or dishonesty of taxpayer communications in an enforcement regime

In many settings the true likelihood of capture when engaging in an illegal activity, such as tax evasion, is not well known to an individual. “Official” statements from the tax administration regarding enforcement effort provide some information. In addition, “informal”, or “unofficial”, communication among taxpayers can supplement these official announcements, but individuals do not know with certainty whether such unofficial information is honest (or accurate) versus dishonest (or inaccurate). We examine the truthfulness of an individual’s revelation of unofficial information to other individuals, along with the factors that affect any revelation, focusing on the intrinsic motivations for revelations. Our experimental design allows us to examine the type and the honesty of messages that an individual chooses to send to other individuals regarding their own audit outcome and their own compliance behavior. Our results indicate that most individuals send accurate messages about their own audit outcomes and their own compliance behaviors. Nevertheless, many individuals are also systematically dishonest about being audited; that is, we observe a significant tendency for individuals to claim that they were audited when they were not. We also observe a strong interaction between individuals’ audit outcomes and their compliance behaviors, so that individuals who engaged in tax evasion and who were audited were more truthful in their communications than those whose tax evasion went undetected.     

New frontiers in qualitative longitudinal research: an agenda for research

This paper outlines the state of the art in qualitative longitudinal methodology, reflecting on more than 10 years of development since a previous special issue on qualitative longitudinal research was published by the International Journal of Social Research Methodology in 2003. The papers presented in this special issue emerge from a methodological innovation network that brought together an international community of researchers in order to map new frontiers for the method. This paper summarises the development of the method from a design to a sensibility, identifying three new frontiers as part of a future research agenda including: the need for a processual imaginary; experimentation with temporal perspectives and orientations and explicating the temporal affordances of our methods.     

Technology and School Social Work Services: Introducing Technology in an Alternative School

SUMMARY

The public school system, one of the largest human service institutions in our nation, is continuously engaged in a struggle to balance the needs of a growing and diverse population with continuing threats of budget cuts. Under these conditions, it becomes even more critical that school social workers understand and appreciate the role of technology in delivering and evaluating services. To assess the effectiveness of school social work services, evaluation will have to be planned for, and systems of data collection and processing will have to be conducted on an ongoing basis.

This paper outlines the process whereby school social workers in a local school district proceeded to introduce technology into their service delivery regimen. Secondly, the paper shows how such technology was, and may be, used to evaluate the services provided by school social workers in an alternative school.     

Reflexivity and Ambivalence: Culture,Creativity and Government in the BBC

The BBC is an exemplary institution in the government of culture. In the context of the neo-liberalism of the 1990s it became also a key experimental site for the development of a new culture of government, one in which notions of markets, efficiency, accountability and audit were translated into the public sector. The focus of this paper is an analysis, based on ethnographic research, of the BBC's culture of markets, accountability and audit in the mid to late nineties. Indebted in part to the Foucauldian concern with the relations between forms of political rationality and specific technologies of government, the paper charts the substance and the anti-creative effects of these techniques. But it stresses also their contestability and negotiability, how they evoke ambivalance and coexist with diverse forms of resistance. In particular, through the case of the BBC, the paper sketches the contours of a sociology of reflexivity based on a more differentiated account of reflexivity than is found in the speculative, often normatively-directed writings of Beck, Giddens and Lash. It points to the layering of reflexivities in and around the contemporary BBC, and to the competing and antagonistic reflexivities that may inhabit any social space.     

The Subpoena of Ethnographic Data

This essay outlines the author's experience of having his ethnographic data subpoenaed. It outlines the challenges of subpoena's to research, and suggests four solutions: (1) Apply for and utilize the National Institutes of Health certificate of confidentiality by asking health‐related questions over the course of one's research; (2) Establish a task force that articulates clear ethical guidelines for ethnographic research, with attention to the conditions wherein ethnographers can break confidentiality (and might also comply with subpoenas). These ethical guidelines should then be made clear to research subjects as a part of informed consent processes; (3) Demand that institutions (institutional review boards) that require confidentiality as a condition of research be required to defend that confidentiality through the office of the general counsel; (4) Socialize the cost of subpoenas, wherein scholars can be part of an insurance pool that will defend them in the event of a subpoena and thereby defend the general enterprise of ethnographic research.     

Towards a transnational lesbian cinema

This article explores the relationship between lesbian independent cinema and transnational cinema in Europe. The first part of the article outlines two main directions--one thematic and the other aesthetic--in which independent lesbian films in Europe utilize aspects of transnational cinema. The next section considers how these films articulate lesbian desire in relation to new discourses of sexual citizenship and immigration in Europe. The third part of the article examines lesbian independent films that seek to underscore the violence of immigration controls in Fortress Europe. What is significant about this group of films is that they encourage us to rethink the issue of sexual citizenship from a transnational perspective.     

SOFTWARE REVIEWS

ABSTRACT

This report outlines the components of wiki technology and its possible applications in the human services. Wikis have the potential to manage the detailed internal and external information and knowledge that is ubiquitous in the human services. For example, a wiki would be an ideal tool to store the knowledge of how things actually work in agencies with high staff turnover or many retiring of baby boomers. Wikis offer the opportunity for veteran staff to disseminate their expertise by hyperlinking knowledge about a certain operation to other operations or procedures. Furthermore, since wikis can be updated by all users, the knowledge can be easily and instantly updated as the human services environment changes. Wikis also offer the capacity to track and manage user changes. The report describes a specific external wiki application for capturing and disseminating community referral information.     

From Otherness to Alliance

Abstract

The first part of this article presents the epistemological evolution of the therapeutic frameworks regarding the treatment of transgender individuals and their partners. It outlines a medical approach and two others-the developmental approach and the deconstructive approach, ones not based on the conception of transgender identity as pathological. Two case studies of couples presenting with gender identity-related issues illustrate their application with particular emphasis on the relational process of gender identity formation and on partners of transgender-identified persons.     

Aging in the Biosocial Order: Repairing Time and Cosmetic Rejuvenation in a Medical Spa Clinic

This article examines the relationship between biosocial meanings of aging and anti‐aging culture, whereby new standards of measuring age derive from nonchronological models of plasticity. The first part explores recent models of functional age, sexual performance, and cognitive health, while the second part outlines the cosmetic rejuvenation practices, discourses, and technologies of medi‐spa clinics that promise to repair the effects of time on the bodies of aging women. Both parts illustrate the sociological significance of the aging body in posttraditional society as the object of increasing public anxieties about the health of aging populations and ethical concerns for extending life.     

An interpretative review of smokeless tobacco research in the United States: Part II

This is the second part of a two-part series reviewing the published literature of smokeless tobacco in the United States. The article explores smokeless tobacco as a pharmacologically addicting substance, educational interventions designed to prevent use or help users quit, and outlines areas of future research.     

Fathers matter: a research review

This review outlines key areas of research in relation to the following: the nature of father involvement; factors influencing involvement; the influence of fathers on children; and social policy developments. It reviews the practice oriented research which has emerged in the UK as engaging fathers has become part of the agenda for many child welfare agencies. It highlights the gaps in research and policy developments in relation to statutory agencies such as social services.     

Bibliography

Summary

Advocates for the application of computer technology in the human services assume that it promotes practice and organizational effectiveness as well as efficiency. Opponents claim that it fragments practice and reinforces the worst, most punitive, and counter-productive aspects of bureaucracy. While each of these positions rests on conflicting theoretical assumptions about the nature of practice, organizational structures, professionalization and information technology, proponents and opponents alike have failed to provide evidence to support their positions or even to recognize that these issues can be framed and tested empirically.

This paper proposes the use of a comparative research design for studying the effect or computerization on program effectiveness and outlines a range of variables which need to be taken into account in addressing the differential impact of computerization on social work practice.     

Substance Use and Abuse and the Role of Social Workers in Germany

SUMMARY

The paper outlines major trends in consumption patterns of alcohol and other drugs in Germany with special focus on the use of cannabis among young people. It discusses primary prevention efforts and describes the current treatment system with its two branches: one for people with alcohol problems and the other for those with drug problems. It highlights the developing role of social work and identifies the research topics that are influenced by social workers and that will influence the debate regarding the future role of the profession.     

Targeting occupations with varying reputations to increase tax revenue

If the government's goal is to raise tax revenue in a cost-effective manner, which (if any) occupation categories could be targeted with a higher probability of an audit to yield increased revenue? Looking beyond mere opportunity to evade (e.g., self-employment) and starting from the premise that taxpayers in certain occupations evade more than others, the issue is whether these taxpayers respond to a change in the audit rate. Theory suggests that compliance increases in response to higher audit rates; the occupations with the higher evaders could therefore be targeted. This theory is tested by drawing a connection between occupation, reputation, and tax compliance. We assume that taxpayers in occupations with high need for reputation respond to a lower extent to increased tax audits than taxpayers whose achievement does not depend on reputation. The results support the effectiveness of raising tax revenue by targeting specific occupations, non-managers, with a higher probability of an audit.     

Evolving Ethical Standards in the Digital Age

ABSTRACT

Ethical standards in social work have matured significantly since the formal inauguration of the profession in the late 19th century. This article traces the global evolution of ethical standards in social work, focusing especially on current challenges in the digital age. The author discusses changes over time in social workers’ understanding of ethical issues and development of conceptual frameworks and protocols for managing them. Social workers’ increasing use of digital technology poses novel and unprecedented ethical challenges pertaining to privacy, confidentiality, informed consent, professional boundaries, conflicts of interest, documentation, client abandonment, and professionalism, among others. The article outlines emerging ethical standards designed to help social workers manage ethical challenges in the digital age.