Negotiating parental/familial responsibility in genetic counselling

Abstract

The notion of responsibility is central in healthcare encounters, especially when it involves decisions about others, e.g., parents making decisions for children’s wellbeing. In the context of genetic counselling, given the familial basis of genetic disorders, decisions surrounding offer/uptake of genetic testing to determine the risk status of children become salient. Previous studies have shown that both genetic counsellors and parents routinely orient to others’ perspectives. Extending Pilnick’s (2001) finding that genetic counsellors allude to ‘what other people do’, Sarangi’s (2010) proposal which distinguishes between ‘family-others’ and ‘general-others’ vis-à-vis role-responsibility offers a useful framework to examine how parental/familial responsibility is contingently negotiated between genetic counsellors and parents. Our data consist of 20 genetic counselling sessions within a hospital department of medical genetics in Norway. The parents are either affected by cancer or at a high risk of inheriting cancer because of family history. Using discourse analysis we demonstrate how parental responsibility is framed and responded to differentially to cover genetic risk assessment, the testing process and the dissemination of test results. Our findings indicate that counsellors tend to be more directive about the process of decision making, which may amount to shifting attention from at-risk children to the parents themselves. We link our findings to the professional ethos of (non)directives in genetic counselling.