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

Taylor, Sandra D. (2004) Predictive genetic test decisions for Huntington's disease: context, appraisal and new moral imperatives. Social Science & Medicine, 58 1: 137-149. doi:10.1016/S0277-9536(03)00155-2


Author Taylor, Sandra D.
Title Predictive genetic test decisions for Huntington's disease: context, appraisal and new moral imperatives
Journal name Social Science & Medicine   Check publisher's open access policy
ISSN 0277-9536
Publication date 2004-01-01
Sub-type Article (original research)
DOI 10.1016/S0277-9536(03)00155-2
Open Access Status Not Open Access
Volume 58
Issue 1
Start page 137
End page 149
Total pages 13
Editor S. Macintyre
Place of publication UK
Publisher Elsevier/Pergamon
Language eng
Subject C1
321011 Medical Genetics
730107 Inherited diseases (incl. gene therapy)
Abstract 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.
Keyword Predictive Genetic Testing
Huntingtons Disease
Ethics
Australia
Public, Environmental & Occupational Health
Social Sciences, Biomedical
Huntington's Disease
Risk Perception
Dutch Program
Family
Responsibility
Applicants
Attitudes
Q-Index Code C1

Document type: Journal Article
Sub-type: Article (original research)
Collections: 2005 Higher Education Research Data Collection
School of Nursing, Midwifery and Social Work Publications
 
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Created: Wed, 15 Aug 2007, 14:46:48 EST