Impact of genetic testing for breast cancer predisposition on psychological adjustment and related health behaviours.

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This Australia-wide, longitudinal study will examine the psychological effects of testing for breast cancer predisposing genes in women with a strong family history of breast cancer. Mutation detection carries with it the possibility of improving survival through increased emphasis on screening and prevention, while those found to be non-carriers can return to population screening levels, alleviating both their anxiety and the costs associated with greater vigilance. Preventative surgery is now known to significantly reduce risk in women with a strong family history of breast cancer. Whether these potential benefits are realised in practice needs to be evaluated, as do potential psychological harms, if any. Predictive genetic testing for hereditary breast cancer has become technically possible before its impact on psychological outcomes has been evaluated. As yet there are no Australian data on the impact of predisposition testing in any potentially treatable adult onset conditions and only preliminary overseas data. Results from this study may therefore have application to other potentially treatable adult onset conditions. Changes before and after testing in psychological status will be studied (using established methodology) over a 2-year period to identify when negative outcomes are most likely to occur. In addition, this study aims to identify factors that facilitate or hinder psychological adjustment so as to inform clinical decisions about testing and to allow appropriate interventions to be devised. Assessment of individual's preferences for the amount of information they receive will allow tailoring of information to maximise the benefit of educational materials and potentially minimise distress. Factors which influence women's decisions to undertake prophylactic surgery and their satisfaction with those procedures will be assessed.