Knowledge and attitudes towards genetic testing in those affected with Parkinson’s disease

Scuffham, Tracey M., McInerney-Leo, Aideen, Ng, Shu-Kay and Mellick, George (2014) Knowledge and attitudes towards genetic testing in those affected with Parkinson’s disease. Journal of Community Genetics, 5 2: 167-177. doi:10.1007/s12687-013-0168-7

Author Scuffham, Tracey M.
McInerney-Leo, Aideen
Ng, Shu-Kay
Mellick, George
Title Knowledge and attitudes towards genetic testing in those affected with Parkinson’s disease
Journal name Journal of Community Genetics   Check publisher's open access policy
ISSN 1868-310X
Publication date 2014-04
Year available 2013
Sub-type Article (original research)
DOI 10.1007/s12687-013-0168-7
Open Access Status
Volume 5
Issue 2
Start page 167
End page 177
Total pages 11
Place of publication Heidelberg, Germany
Publisher Springer
Collection year 2014
Language eng
Abstract Advances in genetic tests provide valuable information for clinicians and patients around risks and inheritance of Parkinson’s Disease (PD); however, questions arise whether those affected or at risk of PD will want genetic testing, particularly given that there are no preventive or disease-modifying therapies currently available. This study sought to determine knowledge and attitudes toward genetic testing for those affected with PD. A cross-sectional study was undertaken using a standardized questionnaire with six multi-choice genetic knowledge and 17 multi-choice attitude items. Participants were selected from a registry of people affected with PD living in Queensland, Australia. Half of the selected index cases had a family history of PD. Ordinal regression was used to evaluate the association between support for genetic testing and demographic, knowledge, and other attitudinal factors. The level of genetic knowledge was relatively low (37 % correct responses). The vast majority supported diagnostic testing (97 %) and 90 % would undertake a genetic test themselves. Support for predictive was lower (78 %) and prenatal genetic testing had the least support (58 %). Benefits of testing were identified as the ability to know the child’s risk, seek therapies, and helping science with finding a cure. Concerns about genetic testing included potential emotional reactions and test accuracy. Genetic knowledge was not significantly associated with attitudes towards genetic testing. Patients with PD have strong interest in genetic testing for themselves with support for diagnostic testing but less support for predictive and prenatal testing. Genetic knowledge was unrelated to testing attitudes.
Keyword Genetic counseling
Genetic testing
Parkinson’s disease
Q-Index Code C1
Q-Index Status Confirmed Code
Institutional Status UQ
Additional Notes Published online: 10 September 2013.

Document type: Journal Article
Sub-type: Article (original research)
Collections: Official 2014 Collection
UQ Diamantina Institute Publications
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Created: Fri, 14 Mar 2014, 12:24:32 EST by Kylie Hengst on behalf of UQ Diamantina Institute