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Abstract
Despite international concern about unregulated genetic susceptibility testing, including genetic tests for risk of psychiatric disorders, there is surprisingly little data on the determinants of community interest in such testing, its psychosocial impacts and effect on health behaviour. This thesis is composed of a series of inter-related studies. Using major depressive disorder as an exmaple, the first study investigates public interest in genetic susceptibility testing for risk of, perception of potential for genetic discrimination, privacy issues, ethical implications and potential stigma resulting from genetic risk information about psychiatric disorders using qualitative and quantitative methodology (Studies 1A and 2A). This thesis then investigates how genetic risk information might be used in preventive health care using qualitative and quantitative methodology (Studies 1B and 2B). Finally, using mixed methods, this thesis investigates print media portrayal of psychiatric genetics to facilitate insights into how these issues are positioned on the public and political agenda (Study 3).
The findings demonstrated high community interest in genetic susceptibility testing for risk of major depressive disorder. Personal history of mental illness, self-estimation of being at higher than average risk for depression, belief that a genetic component would increase rather than decrease stigma and endorsement of perceived benefits of genetic testing positively and significantly predicted interest. The findings also showed that clinical services were the preferred mode of access for genetic susceptibility testing, with some interest in direct to consumer (DTC) genetic testing.
Despite finding attitudes that a genetic explanation for mental illness would increase rather than decrease stigma, there was strong community acceptance of depression risk genotyping. Healthy individuals were prepared to modify a genetic predisposition for major depressive disorder at a pre-symptomatic stage through preventive behaviours, although perceptions about whether environmental risk factors were modifiable varied. Target groups most likely to engage in such interventions were those with a self-estimation of being at higher than average risk of major depressive disorder and those who endorsed the view that mental illness may develop from both genetic and modifiable environmental risk factors. The results suggest that genetic risk information has a potential value as an early intervention and preventive tool.
An over emphasis on optimism about perceived clinical benefits of genetic research in psychiatry and largely unfulfilled predictions about availability could encourage unrealistic expectations about future molecular-based treatment options.