Negotiating parental/familial responsibility in genetic counselling

Authors

  • Gøril Thomassen Norwegian University of Science and Technology (NTNU)
  • Srikant Sarangi Aalborg University
  • John-Arne Skolbekken Norwegian University of Science and Technology (NTNU)

DOI:

https://doi.org/10.1558/japl.v9i3.20847

Keywords:

decision-making, dissemination of test results, genetic counselling, genetic risk, genetic testing, (non-)directiveness, parental/familial responsibility

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.

Author Biographies

  • Gøril Thomassen, Norwegian University of Science and Technology (NTNU)

    Gøril Thomassen received her PhD in applied linguistics from the Norwegian University of Science and Technology (NTNU) and is currently Associate Professor in the Department of Language and Literature (NTNU). Her research interests are within applied linguistics and professional discourse studies, including discourse analysis of various forms of healthcare communication. She is now working on a project on team communication in simulated and in real clinical emergency encounters.

  • Srikant Sarangi, Aalborg University

    Srikant Sarangi, formerly at Cardiff University, is currently Professor and Director of the Danish Institute of Humanities and Medicine/Health (DIHMH) at Aalborg University. His research interests are in institutional/professional discourse studies (e.g., healthcare, social work, bureaucracy, education) and applied linguistics. He is author and editor of twelve books, guest-editor of five journal special issues and has published nearly two hundred journal articles and book chapters.

  • John-Arne Skolbekken, Norwegian University of Science and Technology (NTNU)

    John-Arne Skolbekken, has a PhD in health science and is professor in the Department of Social Work and Health Science NTNU. His research interests are within modern medical risk discourse, including risk communication in such settings as advertisements for pharmaceutical products, genetic counselling and various forms of medical screening. A common theme in his research is the ethical implications of risk communication.

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Published

2015-07-10

How to Cite

Thomassen, G., Sarangi, S., & Skolbekken, J.-A. (2015). Negotiating parental/familial responsibility in genetic counselling. Journal of Applied Linguistics and Professional Practice, 9(3), 361–386. https://doi.org/10.1558/japl.v9i3.20847

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