Predictive genetic test decisions for Huntington's disease: context, appraisal and new moral imperatives

Predictive testing is one of the new genetic technologies which, in conjunction with developing fields such as pharmacogenomics, promises many benefits for preventive and population health. Understanding how individuals appraise and make genetic test decisions is increasingly relevant as the technology expands. Lay understandings of genetic risk and test decision-making, located within holistic life frameworks including family or kin relationships, may vary considerably from clinical representations of these phenomena. The predictive test for Huntington's disease (HD), whilst specific to a single-gene, serious, mature-onset but currently untreatable disorder, is regarded as a model in this context. This paper reports upon a qualitative Australian study which investigated predictive test decision-making by individuals at risk for HD, the contexts of their decisions and the appraisals which underpinned them. In-depth interviews were conducted in Australia with 16 individuals at 50% risk for HD, with variation across testing decisions, gender, age and selected characteristics. Findings suggested predictive testing was regarded as a significant life decision with important implications for self and others, while the right not to know genetic status was staunchly and unanimously defended. Multiple contexts of reference were identified within which test decisions were located, including intra- and inter-personal frameworks, family history and experience of HID, and temporality. Participants used two main criteria in appraising test options: perceived value of, or need for the test information, for self and/or significant others, and degree to which such information could be tolerated and managed, short and long-term, by self and/or others. Selected moral and ethical considerations involved in decision-making are examined, as well as the clinical and socio-political contexts in which predictive testing is located. The paper argues that psychosocial vulnerabilities generated by the availability of testing technologies and exacerbated by policy imperatives towards individual responsibility and self-governance should be addressed at broader societal levels. (C) 2003 Elsevier Science Ltd. All rights reserved.

Post-Fordism, the welfare state and the personal social services: A comparison of Australia and Britain

The Post-Fordist welfare state thesis locates contemporary social welfare change within a wider analysis of the transformation of capitalist accumulation regimes. Whilst this analysis is useful in directing attention to macro socio-economic change, it has for the most part contained three shortcomings. First, the Post-Fordist thesis has overemphasized the role of historical 'breaks' in the development of social welfare as it purportedly passes from Fordism to Post-Fordism. Second, the thesis has assumed a degree of convergence between welfare states as a result of global economic forces. In doing so, it has underemphasized the mediating impact of existing institutional arrangements within nations. Third, the thesis has assumed, rather than demonstrated, the specific changes which are alleged to be taking place in various fields of social welfare. As a consequence, aspects of continuity in social welfare have been neglected. These three lacunae are addressed through a comparative analysis of developments in the personal social services in Australia and Britain. Services to older people are employed as the specific context of comparison in relation to three dimensions of measuring transformation along a Post-Fordist trajectory: a shift from a unitary economy to a mixed economy of service provision; changes in the model of service delivery and consumption; and strengthening the governance function of the central state. This comparative analysis suggests the need for refinement of the Post-Fordist welfare state thesis concerning the restructuring of social welfare and its impact on the personal social services.

Environmental regulation of land use and public compensation: principles, and Swiss and Australian examples

The authors discuss the regulation of rural land use and compensation for property-rights restrictions, both of which appear to have become more commonplace in recent years but also more contested. The implications of contemporary theories in relation to this matter are examined, including: the applicability of new welfare economics; the relevance of the neoclassical theory of politics; and the implications of contemporary theories of social conflict resolution and communication. Examination of examples of Swiss and Australian regulation of the use of rural properties, and the ensuing conflicts, reveals that many decisions reflect a mixture of these elements. Rarely, if ever, are social decisions in this area made solely on the basis of welfare economics, for instance social cost-benefit analysis. Only some aspects of such decisions can be explained by the neoclassical theory of politics. Theories of social conflict resolution suggest why, and in what way, approaches of discourse and participation may resolve conflicts regarding regulation and compensation. These theories and their practical application seem to gain in importance as opposition to government decisions increases. The high degree of complexity of most conflicts concerning regulation and compensation cannot be tackled with narrow economic theories. Moreover, the Swiss and Australian examples show that approaches involving conflict resolution may favour environmental standards.

E-Government, targeting and data profiling: Policy and ethical issues of differential treatment

Networked information and communication technologies are rapidly advancing the capacities of governments to target and separately manage specific sub-populations, groups and individuals. Targeting uses data profiling to calculate the differential probabilities of outcomes associated with various personal characteristics. This knowledge is used to classify and sort people for differentiated levels of treatment. Targeting is often used to efficiently and effectively target government resources to the most disadvantaged. Although having many benefits, targeting raises several policy and ethical issues. This paper discusses these issues and the policy responses governments may take to maximise the benefits of targeting while ameliorating the negative aspects.

Bad apples in bad barrels revisited: Cognitive moral development, just world beliefs, rewards, and ethical decision-making

In this study, we test the interactive effect on ethical decision-making of (1) personal characteristics, and (2) personal expectancies based on perceptions of organizational rewards and punishments. Personal characteristics studied were cognitive moral development and belief in a just world. Using an in-basket simulation, we found that exposure to reward system information influenced managers' outcome expectancies. Further, outcome expectancies and belief in a just world interacted with managers' cognitive moral development to influence managers' ethical decision-making. In particular, low-cognitive moral development managers who expected that their organization condoned unethical behavior made less ethical decisions while high cognitive moral development managers became more ethical in this environment. Low cognitive moral development managers also behaved less ethically when their belief in a just world was high.

The burden of disease and injury in Australia

An overview of the results of the Australian Burden of Disease (ABD) study is presented. The ABD study was the first to use methodology developed for the Global Burden of Disease study to measure the burden of disease and injury in a developed country. In 1996, mental disorders were the main causes of disability burden, responsible for nearly 30% of total years of life lost to disability (YLD), with depression accounting for 8% of the total YLD. Ischaemic heart disease and stroke were the main contributors to the disease burden disability-adjusted life years (DALYs), together causing nearly 18% of the total disease burden. Risk factors such as smoking, alcohol consumption, physical inactivity, hypertension, high blood cholesterol, obesity and inadequate fruit and vegetable consumption were responsible for much of the overall disease burden in Australia. The lessons learnt from the ABD study are discussed, together with methodological issues that require further attention.