'There's this thing in our family': predictive testing and the construction of risk for Huntington Disease

Citation
Sm. Cox et W. Mckellin, 'There's this thing in our family': predictive testing and the construction of risk for Huntington Disease, SOCIOL HEAL, 21(5), 1999, pp. 622-646
Citations number
58
Categorie Soggetti
Public Health & Health Care Science
Journal title
SOCIOLOGY OF HEALTH & ILLNESS
ISSN journal
01419889 → ACNP
Volume
21
Issue
5
Year of publication
1999
Pages
622 - 646
Database
ISI
SICI code
0141-9889(199909)21:5<622:'TTIOF>2.0.ZU;2-1
Abstract
Recent approaches to the new genetics stress the importance of placing here ditary risk within the context of familial beliefs and dynamics. Nonetheles s, few empirical studies on predictive genetic testing have explored the me aning and significance of hereditary risk within everyday life. Drawing upo n in-depth interviews with 21 families, this paper examines the social cons truction of hereditary risk for one adult onset disorder, Huntington Diseas e. Highlighting the social, biographical and temporal factors that families consider when discussing risk and its modification through predictive gene tic testing, eve find that Mendelian theories of inheritance seldom provide an adequate framework. Such objectified knowledge makes sense on an abstra ct level but is ultimately inadequate for describing the fluctuating releva nce of risk as it develops within the nexus of familial relations.