Does breast cancer genetic counselling meet women's expectations? A qualitative study

Abstract

A high demand exists in the United Kingdom for breast cancer genetic counselling. Due to the disease's high incidence, many women who received such counselling are eventually assessed as not being at high genetic risk. This study elicits the experiences and perceptions of such women, as little research has been conducted. A qualitative interview-based study was conducted in the north-east of Scotland with a sample of women at low to moderate risk of developing breast cancer, who had received genetic counselling. The interviews addressed the women's reasons for attending genetic counselling, their prior expectations and their perceptions of the outcomes of counselling. A thematic analysis was conducted to identify the key themes. The women themselves were mainly responsible for raising concerns regarding family history and, in general, sought information and reassurance about their own risk. Whilst they generally felt reassured after counselling, many did not understand the information they had been given and some continued to overestimate their own risk of disease. For many an important motivation for seeking counselling was to receive (more frequent) mammography screening, for which they perceived the genetic counsellors as gatekeepers. Some also expected a genetic test. The study findings were consistent with much of the published literature. Genetic counsellors must understand that genetic information, especially the risk as perceived, is not always well understood. This in turn may influence the further communication of risk information within the family. Also, people coming forward for genetic counselling may not be aware of some of the unintended consequences of such counselling, such as, for example, having to declare information to insurance companies and/or (potential) employers. If primary care practitioners are the main route through which people reach genetic counsellors, these professionals need to be kept up to date on issues related to genetics, and genetic testing and counselling.

Keywords:

• Genetic counselling
• hereditary breast cancer
• family history
• qualitative methods
• mammography screening
• familial disease
• Scotland
• risk perception
• nurse-led counselling

Acknowledgements

The authors would like to thank all the women who took part in this study, without whom it would not have been possible. They also acknowledge the very helpful comments and queries from anonymous reviewers of their initial submission.