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The risk information to be conveyed as part of expert counselling of women at increased risk for breast cancer potentially impacts on decision making about screening, prophylactic strategies, and psychological adjustment. Australian geneticists and genetic counsellors working in cancer genetics nominated risk counselling as the central feature of their work.1 Also, women attending genetic counselling expect to discuss their own and other family members’ risk.2–6
However, studies have consistently reported high levels of inaccurate risk perception in women at high risk, even after counselling, suggesting that risk counselling as currently practised in not optimal.7–10
The information to be conveyed about risk related to breast cancer is exceedingly complex. Statistics commonly presented to patients include population and individual risk, not only for breast cancer, but also for other cancers associated with BRCA1 and BRCA2 mutations, for example, ovarian cancer. Risk may be presented separately for different age groups, for men, and for those with an Ashkenazi Jewish background (which conveys a higher risk). The proportion of population risk attributable to germline mutations may be presented. Risk may be given for an unaffected person’s chance of developing breast cancer, or for an affected person’s chance of developing a second cancer. The risk estimate may apply to the next five years, the next 10 years, or to a lifetime. The probability that a family may have a germline breast cancer susceptibility gene mutation may be raised. Finally, the risk estimates for cancer in proven mutation carriers (and their broad confidence intervals) may be discussed, and the chance of the mutation being found through testing. The multitude of risk statistics possibly presented (sometimes in several formats) has the potential to leave the patient confused and distressed.
Although previous studies have identified the type of information women with breast cancer …