‘There are no rights and wrongs in these situations’: identifying interactional difficulties in genetic counselling

Abstract

The rapid scientific and technological advances in the field of human genetics have created an ever-widening gap in knowledge and understanding between those specialists who are involved with them and the general public who are the intended beneficiaries. Genetic counselling is seen as an important way of addressing this gap. Whilst there is a growing literature on genetic counselling, this has tended to focus on quantitative measures of outcome. However, there is a growing recognition that genetic counselling is a communicative process, and needs to be studied as such. This paper presents extracts from a body of data collected at a regional genetic counselling centre, and analysed using a conversation analytic approach. A particular emphasis is placed upon the communication of genetic information by counsellors and the ways in which this is received by clients, and how this impacts upon the ways in which topics for discussion are arrived at. Four areas around which interactional difficulties arise are identified: achieving a client-led agenda; knowing what is relevant for a particular client; managing different activities within counselling; and managing the multiple perspectives of clients.

A qualitative study exploring genetic counsellors’ experiences of counselling children

“…Importantly, this technique may contradict client-led counselling. 45 Rather it may be better to acknowledge that silence or limited communication may be a protective response to medical diagnoses 46 and, despite counsellors' efforts, children may find it hard to distinguish between genetic counselling and other medical consultations. Indeed, it has been proposed that 'Denial is perhaps the most straightforward [strategy to cope with genetic threat] -to try to ignore the issue, refuse to discuss it and to keep well away from geneticists' (Richards,47 pp.…”

Quality issues concerning genetic counselling for presymptomatic testing: a European Delphi study

“…If genetic counselling is a communication process, it can only be fully understood when studied as such. 23 Nevertheless, even when results of our study showed that experts highlighted the consultant-centred practice as a high standard of quality during PST counselling, tools that are currently being used did not specifically address the process of genetic counselling.…”

“…21,22 Previous studies on quality of genetic counselling have been mainly focused on outcomes and have been frequently related to changes in reproductive behaviour and/or client knowledge among other factors, although we believe that effectiveness in genetic counselling remains fundamentally related to its process. A review by Pilnick et al 23 highlighted the gap in our knowledge of the relationship between outcome and process, emphasising the need to identify specific components of the process that results in the consultant's satisfaction and the factors that are likely to influence it. 23 In addition, we consider that quality assessment can only be achieved effectively through the use of appropriate methodological tools.…”

“…A review by Pilnick et al 23 highlighted the gap in our knowledge of the relationship between outcome and process, emphasising the need to identify specific components of the process that results in the consultant's satisfaction and the factors that are likely to influence it. 23 In addition, we consider that quality assessment can only be achieved effectively through the use of appropriate methodological tools. If genetic counselling is a communication process, it can only be fully understood when studied as such.…”

Commentary: a sociologist's view on community genetics

“…An interpretive analysis is needed in order to better understand the ways in which social and ethical considerations involved in community genetics acquire situated meanings within institutional and political contexts. It is also required for realizing the different meanings of genetic testing for the participants, and the different arenas (public and private) in which these meanings are negotiated within the community or the network of individuals and families that are affected by genetic risk (see for example Atkin et al 2008;Pilnick 2002;McAllister 2001;Featherstone et al 2006;Raz 2005).…”