Risk perception among women receiving genetic counseling: a population-based follow-up study

We aimed to explore the impact of genetic counseling on perceived personal lifetime risk of breast cancer, the accuracy of risk perception, and possible predictors of inaccurate risk perception 1 year following counseling.

We conducted a population-based prospective follow-up study of 213 women who received genetic counseling for hereditary breast and ovarian cancer, 319 women who underwent mammography (Reference Group I), and a random sample of 1070 women from the general population (Reference Group II).

Women who received genetic counseling decreased their perceived risk by an average of 6.6 percentage points (95% CI: 3.0%; 10.2%) between baseline and 12 months of follow-up. In contrast, perceived risk remained relatively stable in the reference groups. The proportion of women who accurately perceived their risk increased by 16% in the group receiving genetic counseling, compared to a reduction of 5% (p=0.03) and 2% (p=0.01) in Reference Groups I and II, respectively. Risk communicated only in words, inaccurate risk perception at baseline, and presence of a familial mutation appeared to be predictors of inaccurate risk perception 12 months after counseling.

This population-based study of women with a family history of breast or ovarian cancer indicates that genetic counseling can help them both to reduce their perceived risk and to achieve a more realistic view of their risk of developing breast cancer.