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.

A political analysis of the PRSP initiative: Social struggles and the organization of persistent relations of inequality

The current global development project appears to be premised on the assumption that underlying political debates over development have been settled. An upshot of this is that development is reduced to the theoretical, ideological and legal framework of a neo-liberal political order. However, implicit, and sometimes explicit, political dynamics of development can be rendered from a perspective that foregrounds social struggles. I offer a political analysis of the PRSP initiative by examining its evolution and implications considered within social and political contexts, and by specific reference to the 'poverty reduction' interventions that emerged in the 1980s. I argue that the PRSP initiative is best understood as the formation of a comprehensive extension of neo-liberal strategic responses that emerged in the 1980s. In this context, I discuss the example of microcredit schemes in relation to the PRSP process and demonstrate the analytical significance of micro-political social relations for political analyses of development. The approach I adopt reveals social struggles as relationally constitutive of formations of a hegemonic development discourse otherwise ostensibly rendered in de-contextualized terms. From the perspective of critical development analysis such struggles are the concrete expressions of the contradictions immanent to the dialectic of development through inequality and immiseration in the (re)production of social power.

Role of LBPA and Alix in multivesicular liposome formation and endosome organization

What are the components that control the assembly of subcellular organelles in eukaryotic cells? Although membranes can clearly be distorted by cytosolic factors, very little is known about the intrinsic mechanisms that control the biogenesis, shape, and organization of organellar membranes. Here, we found that the unconventional phospholipid lysobisphosphatidic acid (LBPA) could induce the formation of multivesicular liposomes that resembled the multivesicular endosomes that exist where this lipid is found in vivo. This process depended on the same pH gradient that exists across endosome membranes in vivo and was selectively controlled by Alix. In turn, Alix regulated the organization of LBPA-containing endosomes in vivo.

Zebrafish as a model for caveolin-associated muscle disease; caveolin-3 is required for myofibril organization and muscle cell patterning

Caveolae are an abundant feature of many animal cells. However, the exact function of caveolae remains unclear. We have used the zebrafish, Danio rerio, as a system to understand caveolae function focusing on the muscle-specific caveolar protein, caveolin-3 (Cav3). We have identified caveolin-1 (alpha and beta), caveolin-2 and Cav3 in the zebrafish. Zebrafish Cav3 has 72% identity to human CAV3, and the amino acids altered in human muscle diseases are conserved in the zebrafish protein. During embryonic development, cav3 expression is apparent by early segmentation stages in the first differentiating muscle precursors, the adaxial cells and slightly later in the notochord. cav3 expression appears in the somites during mid-segmentation stages and then later in the pectoral fins and facial muscles. Cav3 and caveolae are located along the entire sarcolemma of late stage embryonic muscle fibers, whereas beta-dystroglycan is restricted to the muscle fiber ends. Down-regulation of Cav3 expression causes gross muscle abnormalities and uncoordinated movement. Ultrastructural analysis of isolated muscle fibers reveals defects in myoblast fusion and disorganized myofibril and membrane systems. Expression of the zebrafish equivalent to a human muscular dystrophy mutant, CAV3P104L, causes severe disruption of muscle differentiation. In addition, knockdown of Cav3 resulted in a dramatic up-regulation of eng1a expression resulting in an increase in the number of muscle pioneer-like cells adjacent to the notochord. These studies provide new insights into the role of Cav3 in muscle development and demonstrate its requirement for correct intracellular organization and myoblast fusion.