Genetic Counselling Communication: A Discourse‐Analytical Approach

Abstract

For a long time, the genetic counselling process had remained a blackbox, especially from a discourse‐analytical perspective. Over the last two decades, the rich and complex communication process that constitutes the ‘hybrid’ activity of genetic counselling has been a focus of study using discourse analysis methodology. Thematically, genetic counselling encompasses topics as diverse as the natural history of a genetic disorder, aspects of (non)diagnosis and prognosis, (non)treatability, lay genetic awareness, future risks for a client and other family members, reproduction choices, psychosocial aspects of coping, the ethical and legal consequences of decisions and privacy issues concerning the disclosure/circulation of genetic information. This range of topics does not follow neat and parallel interactional trajectories; instead the topics become interweaved in an overlapping manner and are managed interactionally under given conditions, including the multiparty nature of participation in the counselling encounter. A discourse‐analytical approach is an attempt to uncover the structural, interactional and thematic organisation of genetic counselling as a situated activity.

Key Concepts:

  • Genetic counselling as a communicative activity is complex and hybrid, which does not follow a simple ritual interactional routine.

  • The notion of ‘activity type’ (forms of setting) to characterise communicative events with component ‘discourse types’ (forms of talk) is a useful way to capture the dynamic and variable nature of genetic counselling across modes (face‐to‐face versus telephone‐mediated), disease conditions as well as sociocultural settings.

  • The activity of genetic counselling can be mapped structurally, interactionally and thematically to illustrate the unique nature of the counselling process.

  • Concepts such as directiveness and nondirectiveness are part of a continuum and are manifest differently at the interactional level.

  • At a thematic level, risk and uncertainty are two sides of the same coin and the language of probability assumes significance in terms of risk explanation and risk perception.

  • The concept of risk is far more complex in genetic counselling than in other disease settings as it includes the associated ‘risk of knowing’ and the ‘risk of (non)disclosure’.

  • Negotiation of what is normal and what is abnormal can be mapped on to risk/uncertainty trajectories in genetic counselling.

  • The management of ethical and moral issues in genetic counselling requires an interaction‐based situated approach in preference to the principle‐based guidelines.

  • In discourse analytic terms, it is possible to distinguish between psychological and sociomoral dimensions of genetic counselling, which underpin clients' decision‐making.

  • The self‐other orientations (e.g. self versus other; self and other and self‐as‐other) are a key feature of genetic counselling.

Keywords: discourse analysis; activity type; decision‐making; advice‐giving; risk explanation; risk of knowing; uncertainty; probability; nondirectiveness; professional neutrality

Figure 1.

The components of discourse.

Figure 2.

A structural map of genetic counselling. Reproduced with permission from Figure 1 in Sarangi . © SAGE Publications Ltd.

Figure 3.

Interlocking themes in genetic counselling discourse.

Figure 4.

Risks of occurrence, knowing and (non)disclosure. Risk of occurrence, R1; risk of knowing, R2; and risk of (non)disclosure, R3. Adapted with permission from Figure 1 in Sarangi et al.. © Routledge.

Figure 5.

Interplay between the two types of uncertainty and probability.

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Further Reading

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

Arribas‐Ayllon M , Sarangi S and Clarke A (2008) The micropolitics of responsibility vis‐à‐vis autonomy: parental accounts of childhood genetic testing and (non)disclosure. Sociology of Health and Illness 30(2): 255–271.

Arribas‐Ayllon M , Sarangi S and Clarke A (2009) Professional ambivalence: accounts of ethical practice in childhood genetic testing. Journal of Genetic Counselling. doi:10.1007/s10897‐008‐9201‐0.

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Sarangi, Srikant(Sep 2013) Genetic Counselling Communication: A Discourse‐Analytical Approach. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005630.pub2]