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


Taylor, SD, Predictive genetic test decisons for Huntington's disease: context, appraisal and new moral imperatives, Social Science & Medicine, 58, (1) pp. 137-149. ISSN 0277-9536 (2004) [Refereed Article]

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DOI: doi:10.1016/S0277-9536(03)00155-2


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 HD, 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.

Item Details

Item Type:Refereed Article
Keywords:predictive genetic testing, Huntington's disease, ethics, Australia
Research Division:Health Sciences
Research Group:Health services and systems
Research Field:Health services and systems not elsewhere classified
Objective Division:Health
Objective Group:Public health (excl. specific population health)
Objective Field:Behaviour and health
UTAS Author:Taylor, SD (Professor Sandy Taylor)
ID Code:58003
Year Published:2004
Web of Science® Times Cited:63
Deposited By:Sociology and Social Work
Deposited On:2009-09-01
Last Modified:2017-12-08
Downloads:2 View Download Statistics

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