“It didn’t mean anything” – moving within a landscape of knowledge to interpret genetics and genetic test results within familial cancer concerns

Abstract

Genetics is increasingly defining how we understand health and disease, affecting for some, their understanding of inherited disease, and the meaning of medical genetic information. When interpretations of hereditary conditions are determined, partly, by one’s familial experience of heritable characteristics and partly by various other lived experiences, the meaning of genetics becomes highly personal. Through descriptions of stocks of knowledge, this paper describes findings from a qualitative study with a cohort of Black and Asian women with family and personal histories of cancer, about their interpretations of their genetic tests. We describe their interpretations as shaped by different experiences of biomedical practice as well as familial experiences of cancer and genetic testing; and we introduce a metaphor of “moving within a landscape,” to show how those interpretations were created and influenced by various sources of knowledge and life experiences.

Keywords:

• familial
• Black and South Asian
• ethnicity
• knowledge
• genetics

Acknowledgements

An early draft of this work was presented at a seminar for the Greater Manchester Centre for Genomics Medicine Centre seminar (Manchester University NHS Foundation Trust) in June 2019 and we are grateful for their comments. We are very grateful to the women in the study for their time and perspectives in the study. We also thank our reviewer for the very useful comments and for being thoroughly engaged with previous versions.

Disclosure statement

The authors disclose no conflict of interest or payment arising from this project.

Additional information

Funding

This work was supported by Higher Education Funding Council for England [Grant Number King's Access to the Professions - PhD scholarship].