Journal of Applied Linguistics and Professional Practice, Vol 9, No 3 (2012)

Negotiating parental/familial responsibility in genetic counselling

Gøril Thomassen, Srikant Sarangi, John-Arne Skolbekken
Issued Date: 10 Jul 2015


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.

Download Media

PDF (Price: £17.50 )

DOI: 10.1558/japl.v9i3.20847


Arribas-Ayllon, M., Sarangi, S. and Clarke, A. (2008) Managing self-responsibility through other-oriented blame: Family accounts of genetic testing. Social Science & Medicine 66 (7): 1521–1532.

Bosk, C. L. (1992) All God’s Mistakes: Genetic Counseling in a Pediatric Hospital. Chicago: University of Chicago Press.

d’Agincourt-Canning, L. (2001) Experiences of genetic risk: Disclosure and the gendering of responsibility. BioEthics 15 (3): 231–247.

Downing, C. (2005) Negotiating responsibility: Case studies of reproductive decision-making and prenatal genetic testing in families facing Huntington Disease. Journal of Genetic Counseling 14 (3): 219–234.

Featherstone, K., Atkinson, P., Bharadwaj, A. and Clarke, A. (2006) Risky Relations: Family, Kinship and the New Genetics. Oxford: Berg.

Forrest, K., Simpson, S. A., Wilson, B. J., van Teijlingen, E. R., McKee, L., Haites, N. and Matthews, E. (2003) To tell or not to tell: Barriers and facilitators in family communication about genetic risk. Clinical Genetics 64 (4): 317–326.

Kessler, S. (1998) Family processes in regard to genetic testing. In A. Clarke (ed.) The Genetic Testing of Children, 113–122. Oxford: Bios Scientific Publisher.

Hallowell, N. (1999) Doing the right thing: Genetic risk and responsibility. Sociology of Health and Illness 21 (5): 597–621.

Hallowell, N., Foster, C., Eeles, R., Ardern-Jones, A., Murday, V. and Watson, M. (2003) Balancing autonomy and responsibility: The ethics of generating and disclosing genetic information. Journal of Medical Ethics 29 (2): 74–79.

Mead, G. H. (1934) Mind, Self, and Society: From the Standpoint of a Social Behaviourist. Ed. C. W. Morris. Chicago: University of Chicago Press.

Pilnick, A. (2002) What ‘most people’ do: Exploring the ethical implications of genetic counseling. New Genetics and Society 21 (3): 339–350.

Sarangi, S. (2000) Activity types, discourse types and interactional hybridity: The case of genetic counselling. In S. Sarangi and M. Coulthard (eds) Discourse and Social Life, 1–27. London: Pearson.

Sarangi, S. (2007) Other-orientation in patient-centred healthcare communication: Unveiled ideology or discoursal ecology? In G. Garzone and S. Sarangi (eds) Discourse, Ideology and Ethics in Specialised Communication, 39–71. Bern: Peter Lang.

Sarangi, S. (2010) Professional values in interaction: Client-centredness, non-directiveness and other-orientation in genetic counselling. In S. Pattison, B. Hannigan, R. Pill and H. Thomas (eds) Emerging Values in Healthcare: The Challenge for Professionals, 163–185. London: Jessica Kingsley.

Sarangi, S., Bennert, K., Howell, L. and Clarke A. (2003) ‘Relatively speaking’: Relativisation of genetic risk in counselling for predictive testing. Health, Risk and Society 5 (2): 155–169.

Sarangi, S., Brookes-Howell, L., Bennert, K. and Clarke A. (2011) Psychological and sociomoral frames in genetic counselling for predictive testing. In C. N. Candlin and
S. Sarangi (eds) Communication in Professions and Organisations, 235–257. Berlin: Mouton de Gruyter.

Skirton, H. (1998) Telling the children. In A. Clarke (ed.) The Genetic Testing of Children, 103–111. Oxford: Bios Scientific Publishers.

Taylor, S. D. (2004) Predictive genetic decisions for Huntington’s disease: Context, appraisal and new moral imperatives. Social Science & Medicine 58 (1): 137–149.


  • There are currently no refbacks.

Equinox Publishing Ltd - 415 The Workstation 15 Paternoster Row, Sheffield, S1 2BX United Kingdom
Telephone: +44 (0)114 221-0285 - Email:

Privacy Policy