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

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 = 2667) who had presented from 1998 to 2003 regarding predictive or presymptomatic testing for designated mature-onset 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 = 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.

Personalised Medicine: A Critique on the Future of Health Care

“…As a result, tension emerges when personalised medicine can be seen to both empower and absolve individuals of responsibility with regards to their health. Empirical data from Australia illustrates that genetic information about an individual's disease susceptibility changes the way in which individuals perceive themselves and their families and changes the way in which others see them (Taylor et al 2008). Consequently, it is clear that discrimination based on genetic grounds may occur in the social, familial, and legal arenas.…”

Unravelling fears of genetic discrimination: an exploratory study of Dutch HCM families in an era of genetic non-discrimination acts

“…2,[10][11][12][13][14] The most comprehensive study of genetic discrimination in asymptomatic individuals has been completed in Australia. [15][16][17][18] It documents numerous cases of genetic discrimination, the majority of which relate to the insurance industry and employment relations. In a recent Canadian study, Bombard et al 19,20 explored concerns and experiences of genetic discrimination among asymptomatic individuals in Huntington disease families based on family history and genetic test results, and reported that nearly 40% of the participants experienced genetic discrimination in the social sphere or in the domains of insurance or employment.…”

A Population-Based Survey in Australia of Men’s and Women’s Perceptions of Genetic Risk and Predictive Genetic Testing and Implications for Primary Care

“…The threat of discrimination represents a consistently reported disincentive to undertaking predictive testing, with concern shared by genetic clinicians, health practitioners, policy makers, genetic service consumers, and community members alike [3,23,25,26,27]. Multiple accounts of genetic discrimination and its impact have been reported in insurance, employment, family relationships, and/or health services contexts [3,24] and advice about the issue is routinely included in clinical genetics, genetic support groups and general medical practice contexts [9,26,28].…”