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.

Ethnic Print Media in the multicultural nation of Canada: A case study of the black newspaper in Montreal

This article explores the social and cultural roles of ethnic print media in the country within the prism of Canada's multicultural policy. Specifically, the article examines how the ethnic groups are framed in the mainstream national media in Canada and then examines how these ethnic media are [re]constructing their own identities in contrast to their framed identities in the mainstream national print media such as the Globe and Mail, National Post and Toronto Sun. In exploring the overall socio-political impacts of these ethnic print media on the social fabrics and cultural identity in Canadian society, Montreal Community Contact, an ethnic newspaper of the black community in Montreal, is used as a case study. Copyright © 2006 SAGE Publications.

Disability's affect: Or, refugees, communication and community

Cultural theorists have given much attention recently to the notion of 'affect', yet such discussions have not seriously, if at all, raised the question of disability. However we would suggest that disability has very strong relationships with affect. In this paper we argue for the importance of rethinking affect and communication from the perspective of a critical, socio-political account of disability. To illustrate this, we look at affect and disability in two important cases of refugees in Australia.