Understanding people's perceptions of genetics regarding hereditary breast cancer

Pogson, Delia (2010) Understanding people's perceptions of genetics regarding hereditary breast cancer. Postgraduate Conference, Southampton, United Kingdom.

Abstract

The aim of this exploratory study is to gain an understanding of lay people’s knowledge and understanding of genetics regarding hereditary breast cancer, and seeks to provide insight into the needs and preferences for information.

Genetic causes of breast cancer are increasingly being identified and reported in the media, with genetic information becoming more readily available via the internet. It is estimated that of the approximately 44,000 women and 300 men diagnosed with breast cancer in the UK each year, 5-10% of these are caused by genetically inherited mutations (Cancer Research UK 2009). This means that the breast cancer genetic mutation has been passed from either parent to their children, with other family members also being at risk of having this genetic mutation.

Identifying the genetic health status of all the family can be important to individuals so that they can consider genetic testing, monitoring, treatment and surgical strategies. It is therefore considered important for individuals to have some understanding of genetics when trying to make sense of their own and family genetic health and disease status. The Cancer Reform Strategy (Department of Health [DH] 2007) clearly indicates the importance of public awareness and the early detection of cancer.

It is however recognised that genetics is a complex subject and that many individuals have difficulties in making sense of the subject and also in considering this in relation to their own health status (Petersen & Bunton 2002; DH 2003; Samerski 2006; Burke et al 2007). The literature is limited regarding the knowledge and understanding of genetics in the general population, what individuals want to know about genetics, and how it should be presented. This research is exploring individuals understanding of genetic issues in the context of hereditary breast cancer so that we can fully consider their lived experience and to identify their preferences for types and sources of genetic information.

The research is a qualitative study, utilising face-to-face semi-structured interviews with up to 20 individuals recruited from the general population via flyer/poster/journal advertising, and adopting an interpretative phenomenological approach (IPA) to the data analysis (Smith & Osborn 2008; Smith et al 2009). Findings from this study will be disseminated via this poster presentation and within public and professional arenas, and aims to influence future health education materials.

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