How individuals who may have concerns about a family history of breast cancer make sense of genetic information

Abstract

An individual’s personal experience may lead them to start to think about their own family history, to wonder if they might have inherited a genetic risk of breast cancer and start to consider the scientific genetic information. The focus for this research is how individuals make sense of genetic information and has been undertaken with members of the general population before they come into contact with specialist services.

There are clear limitations in the literature addressing the focus of this research, including the population sampled - individuals before they come into contact with services, and the health context - specifically hereditary breast cancer. The literature review demonstrates the limited empirical evidence regarding what is known about how people make sense of genetic information when considered alongside their personal experiences.

This qualitative study recruited ten individuals for whom the research question was significant. Interviews were undertaken and the transcripts analysed utilising Interpretative Phenomenological Analysis [IPA] (Smith et al. 2009). Utilising the IPA approach provided an in-depth and idiographic exploration of this research focus. Three higher order concepts: me and my family, processing information and knowledge, and dealing with it, and eight underpinning super-ordinate themes, were yielded from the data. The findings illustrate the challenges faced by these participants in trying to make sense of genetic information alongside their personal experiences when they try to bring sources of information together, identify what significance genetic information has for them and identify actions that could be put in place.

The study offers insight into sense-making processes in one specific health context, and goes towards advancing the knowledge about how people process complex information such as genetic information. The implications of this study have been considered in terms of informing policy development, increasing public awareness and enhancing the genetic literacy of the general population.

More information

Identifiers

ORCID for Claire Foster: orcid.org/0000-0002-4703-8378

ORCID for Nikki Jarrett: orcid.org/0000-0003-2513-8113

Catalogue record

Export record