Impact of genetic testing – Too much too soon?May 14th, 2012
Knowing your breast cancer BRCA1/2 gene status when first diagnosed can help patients decide on their options for treatment, including preventative mastectomy. However, learning about a hereditary BRCA1/2 genetic fault can also have profound psychological implications – not only for breast cancer patients but also for their families – which can affect treatment decisions.
Associate Professor Bettina Meiser from the University of New South Wales is leading a research project to identify the best ways to educate women about genetic testing following a new diagnosis of breast cancer. A team of multidisciplinary experts from areas including breast surgery, genetic counselling, health economics and statistics, aims to develop effective educational materials, helping women make informed decisions about their treatment.
This project will lead to the development of alternative models and more effective ways of providing genetic information to patients, meeting an increasing demand for genetic information to guide therapeutic choices.
The first stages of this project have seen the development of a detailed patient information booklet and follow-up questionnaire, which have been provided to a pilot group of women. The new education resource was well received by the group, with the women reporting that they now felt more informed about surgical options and their implications.
Patients across New South Wales, Victoria and Queensland will now join a larger trial assessing the impact of patient education materials.