South Wales Doctoral Course in Clinical Psychology, University of Cardiff, Whitchurch, Cardiff.
Predictive testing for Huntington's disease: I. Predictors of uptake in South Wales
Article first published online: 28 JUN 2008
Volume 54, Issue 6, pages 477–488, December 1998
How to Cite
Binedell, J., Soldan, J. R. and Harper, P. S. (1998), Predictive testing for Huntington's disease: I. Predictors of uptake in South Wales. Clinical Genetics, 54: 477–488. doi: 10.1111/j.1399-0004.1998.tb03768.x
- Issue published online: 28 JUN 2008
- Article first published online: 28 JUN 2008
- Received 6 June 1998 revised 31 August 1998 accepted for publication 31 August 1998
- decision making;
- genetic counselling;
- Huntington's disease;
- predictive testing;
In Wales, predictive testing for Huntington's disease (HD) has not been offered proactively to families and uptake of testing is low in comparison to other centres. Little is known of those not requesting testing, particularly those not in direct contact with the genetics service. This study examined differences between a cohort of 22 test applicants and a random group of 32 ‘non-requesters’, drawn from the South Wales HD register. Respondents were interviewed by means of a semi-structured schedule in their own homes. The study groups differed significantly on a number of variables including: knowledge of the availability of testing; perceived attitudes of family members and significant others to testing; length of knowledge and perceived stressfulness of being at risk; and perceived ability to cope with an unfavourable result. Overall, knowledge of testing procedures was poor and at-risk individuals' understanding of genetic terminology was at odds with scientific distinctions. Discussion focuses on the organisational and psychological factors associated with lack of knowledge of the availability of testing and the interpretation of reported coping capacities.