Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients

Taylor, S., Treloar, S., Barlow-Stewart, K., Stranger, M and Otlowski, M. (2008) Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients. Clinical Genetics, 74 1: 20-30. doi:10.1111/j.1399-0004.2008.01016.x


Author Taylor, S.
Treloar, S.
Barlow-Stewart, K.
Stranger, M
Otlowski, M.
Title Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients
Journal name Clinical Genetics   Check publisher's open access policy
ISSN 1399-0004
Publication date 2008-05-19
Year available 2008
Sub-type Article (original research)
DOI 10.1111/j.1399-0004.2008.01016.x
Open Access Status DOI
Volume 74
Issue 1
Start page 20
End page 30
Total pages 11
Editor Hayden, M.
Place of publication Denmark
Publisher Wiley-Blackwell Munksgaard
Language eng
Subject C1
920599 Specific Population Health (excl. Indigenous Health) not elsewhere classified
119999 Medical and Health Sciences not elsewhere classified
Abstract We report first results from the Australian Genetic Discrimination Project of clinical genetics services clients’ perceptions and experiences regarding alleged differential treatment associated with having genetic information. Adults (n ¼ 2667) who had presented from 1998 to 2003 regarding predictive or presymptomatic testing for designated matureonset conditions were surveyed; 951/1185 respondents met inclusion criteria for current asymptomatic status. Neurological conditions and familial cancers were primary relevant conditions for 87% of asymptomatic respondents. Specific incidents of alleged negative treatment, reported by 10% (n ¼ 93) of respondents, occurred in life insurance (42%), employment (5%), family (22%), social (11%) and health (20%) domains. Respondents where neuro-degenerative conditions were relevant were more likely overall to report incidents and significantly more likely to report incidents in the social domain. Most incidents in the post-test period occurred in the first year after testing. Only 15% of respondents knew where to complain officially if treated negatively because of genetics issues. Recommendations include the need for increased community and clinical education regarding genetic discrimination, for extended clinical genetics sector engagement and for co-ordinated monitoring, research and policy development at national levels in order for the full benefits of genetic testing technology to be realised.
Keyword Australia
clients
Genetic Discrimination
genetic testing
survey
Q-Index Code C1
Q-Index Status Confirmed Code
Institutional Status UQ
Additional Notes This article cannot be reproduced without written permission from the publishers.

Document type: Journal Article
Sub-type: Article (original research)
Collections: 2009 Higher Education Research Data Collection
Centre for Military and Veterans' Health Publications
 
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Created: Tue, 10 Mar 2009, 20:21:28 EST by Tegan Cosgrove on behalf of Centre for Australian Military & Veterans' Health