“Doing genetic literacy”: a discourse-oriented approach to literacy in genetic contexts

Abstract

This paper proposes a discourse-oriented approach to genetic literacy. The increased availability of genetic testing requires a certain level of genetic literacy among the public. This is important to understand the benefits and the risks of genetic testing. In this paper, we suggest that genetic literacy is not just a set of knowledge and skills that people have, but something that they do. It is discursively accomplished, and socially and culturally constitutive. We illustrate our approach using a genetic counseling consultation for Sudden Arrhythmic Death Syndrome (SADS). We examine how in this consultation, through careful orientation to the clients’ understanding of genetic information, extended explanation-giving and education on genetics, the geneticist supports the clients in their decision about genetic testing. We discuss our findings in relation to clinical and non-clinical genetic contexts and highlight the importance of genetic literacy and professional support in diverse situations where genetic testing is considered.