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


Autoria(s): Taylor, Sandra D.
Contribuinte(s)

S. Macintyre

Data(s)

01/01/2004

Resumo

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.

Identificador

http://espace.library.uq.edu.au/view/UQ:73684

Idioma(s)

eng

Publicador

Elsevier/Pergamon

Palavras-Chave #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 #C1 #321011 Medical Genetics #730107 Inherited diseases (incl. gene therapy)
Tipo

Journal Article