Evidence-based familial risk explanations in cancer genetic counselling

Abstract

This article examines how genetic counsellors and clients account for evidence when explaining the familial cancer risk. Against the backdrop of scientific developments in genetics, which give rise to new knowledge about genes and genetic tests, there also prevail layers of uncertainty surrounding genetic test results vis-à-vis risk status. Formulation and assessment of evidence thus become a core communicative activity, especially when the evidence is inconclusive, whether based on genetic test results or patterns of family inheritance. Drawing upon transcripts of 26 tape-recorded cancer genetic counselling sessions in Norway, and following discourse analytic methodology, we specifically consider those explanations which are triggered by inconclusive evidence, hence engendering uncertainty. This analysis focuses on the kinds of evidence (e.g. direct vs. indirect) that are mobilised by the counsellors and the clients for specific purposes. We suggest that the counsellors’ cautious framing of evidence is twofold: firstly, it is geared towards management of uncertainty, that is acknowledging the inconclusive nature of current evidence and secondly, evidence-based explanations serve as justifications for future actions, including decisions about future tests in search for more credible evidence.

Keywords:

• genetic counselling
• genetic test
• family inheritance
• direct and indirect evidence
• explanation
• risk
• cancer
• uncertainty

Notes

1. Måseide (2006) demonstrates how in the context of interprofessional medical problem solving, evidence is talked into being – which underscores the discursive dimension of the information-explanation-evidence triad.

2. Original transcripts can be made available upon request from the first author.