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

Authors

  • Alison Pilnick


Abstract

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.

Background

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. Kelly (1986: 343) defines genetic counselling as ‘An educational process that seeks to assist affected and/or at-risk individuals to understand the nature of the genetic disorder, its transmission, and the options open to them in management and family planning’. As Clarke et al. (1996) point out, this makes it clear that genetic counselling is a process centred on the clients and their need to understand the condition in their family (my italics). However, despite the recognition of genetic counselling as a process, it has rarely been studied as such, leading Kessler to suggest that what happens within actual counselling sessions largely remains ‘a mysterious black box’ (1992: 6). Whilst there is a growing body of research into genetic counselling in a variety of settings, it is largely concerned with outcome measures such as recall (e.g.Michie et al. 1997b, Sorenson et al. 1981), impact on reproductive decision making (e.g.Somer et al. 1988, Hildes et al. 1993), or client satisfaction (e.g.Bleiker et al. 1997, Zare et al. 1984). Few studies have considered the process of communication in genetic counselling as a topic in its own right, rather than as a function of other factors such as recall (Michie et al. 1997c), or the experimental success of different methods of counselling in promoting recall and satisfaction (Cull et al. 1988, Young et al. 1986, Fisher et al. 1981, Rowley et al. 1982). Whilst these latter studies are aimed at assessing variations in process, they have in common the outcome measures used as assessment. (For a more comprehensive assessment of the genetic counselling literature, see Pilnick et al. 2000, Pilnick and Dingwall 2001).

This is not to suggest, however, that the importance of research into the communication process has gone unnoticed in genetic counselling. Clarke et al. (1996) highlight the distinction between outcome and process, suggesting that whilst outcome measures are valid in a research context, they are useless in practice. Knowing that a certain percentage of clients were satisfied with a service, for example, will not necessarily shed any light on how or why that satisfaction was achieved. In the same way, an analysis of decision-making outcomes cannot on its own help us to understand how decisions were made and to what extent they were influenced by the counselling process. This concern is echoed by Kessler (1997), who argues that outcome measures are methodologically inadequate, as well as inappropriate, alone. Without a consideration of the counselling process itself alongside the reported outcomes, he suggests that it is impossible to identify ‘where success is being achieved and where remedy is needed’ (Kessler 1992: 8). As a result, the utility of outcomes research in developing practice is limited. The small number of process research studies which have been published to date have utilised a wide variety of methods, but have in common a recognition of the need to develop genetic counselling practice through an identification and specification of training needs and issues. These issues have ranged from the communication of uncertainty (van Zuuren et al. 1997), to dealing with guilt and shame on the part of clients (Kessler et al. 1984) and managing non-directiveness in counselling sessions (Michie et al. 1997a). As with much of the research into genetic service provision, a theoretical framework drawn from social psychology underpins the majority of this work. In particular, established psychological scales have often been used to address specific aspects of counselling, e.g. verbal behaviour and verbal patterns using the Interviewing Attributes Questionnaire (IAQ) and Physician Communication System (PCS) (Mendez and Shymansky 1984). Kessler and Jacopini’s (1982) analysis of a transcript from a counselling session using the Bales system of scoring interaction (Bales 1951), whilst originating in a sociological paradigm, retains a quantitative focus on the process of counselling.

Perhaps unsurprisingly, given the predominance of a quantitative social psychological paradigm in this research area, there appear to be very few qualitative studies of the communication process. However, it is at least arguable that a detailed consideration of communication processes demands a qualitative input. Kessler’s (1981) analysis of a transcript from a counselling session is one exception. The author explicitly states that the motivation for his research is the limitation of outcome studies which results from a lack of knowledge of the actual content, structure and dynamics of the session evaluated. His transcript of a pre-amniocentesis counselling session is analysed in terms of such issues as procedures used by the counsellor, the style of counselling, and the nature of counsellor interaction with counsellees. Kessler concludes that the session was content-oriented, and that the counsellor avoided or evaded affective issues. He also identified elements of directiveness on the part of the counsellor. However, it is important to remember that this is a study of only one consultation, in relation to a particular genetic service. Whilst it may identify potentially problematic issues and provide pointers for training, a larger body of research is clearly needed. A more fundamental problem with this study is the issue of the perspective of the analysis. Whilst we are told that the counsellor avoided affective issues, it is not clear whether the client tried to raise these during the consultation and was unsuccessful, or whether the issues never arose. Communication is a two way process, and any in depth analysis of communication issues needs to be able to take this into account.

Despite the tradition of qualitatively informed work in sociology, there appears thus far to be little work on genetic counselling which is explicitly sociologically informed. Exceptions are Chapple and May’s (1996) and Chapple et al.’s (1997) ethnographic work utilising video data of 30 consultations, supplemented by post-counselling interviews with both counsellor and client. The study group were drawn from an out-patient clinic in a major teaching hospital, and represented a range of both relatively common and more rare genetic disorders. The consultations that were recorded focus largely on the possible presence, and subsequent identification and discussion, of genetic disorders in children up to the age of 18 years. The authors claim that their use of ethnographic methods enables not only detailed insight into family relationships, but also examines this in relation to the actual process of counselling, without transforming it through application of a coding tool or predefined scheme. Their analysis suggests that psychosocial issues such as guilt, stigmatisation or possible damage to family relationships were rarely discussed in counselling sessions. The later paper also considers the use of clinical terminology within counselling sessions, suggesting that the language used is often confusing and misunderstood by families, with unfamiliar terms such as eponymous syndromes conjuring up alarming images. These findings demonstrate the fundamental significance of the communication process itself on the subsequent perceptions and understandings of clients.

This brief review of the literature underlines the need for in-depth qualitative research which not only has communication issues as its primary focus, but which also takes into account the difficulty of dealing practically with the kinds of psychosocial issues identified by Chapple and May (1996) in this setting. This paper presents data drawn from a regional genetic counselling centre, at which clients and their families with a wide range of actual or suspected genetic disorders are seen by both clinical geneticists and genetic counsellors. It utilises the sociological method of conversation analysis, in order to examine counselling sessions as a two-way, dynamic process. The focus of the analysis is on the communication and receipt of genetic information, and in particular the ways in which different aspects of the activity of genetic counselling can contribute to the creation of interactional difficulties.

Methods

The data presented here are taken from a corpus of 15 genetic counselling sessions recorded over a three-month period at a regional clinical genetics centre in the UK. The 15 sessions are all drawn from distinct cases. The clients participating in these sessions represented a wide range of genetic conditions, and also a range of stages of involvement with genetic services. None of the consultations recorded were of first sessions between the client and the service, since in this centre, these are typically carried out by a genetic counsellor in the client’s home. However, for some clients this was the first visit to the clinic, whilst others were returning to receive test results or for follow-up assessment. As will be discussed, this range of activities potentially involves very different interactional contingencies and requirements on the part of both counsellor and client(s). All the encounters were audiotaped. The use of audio rather than video data is not ideal in this setting, since there is inevitably a loss of non-verbal aspects of the encounter. Whilst there is not an explicit visual focus of activity in the consultations presented here, video data would nonetheless have supplemented the analysis in terms of the interpretation of issues such as engagement or disagreement. However, the videotaping of these encounters might also have upset the sensitive dynamic of the counselling sessions, and on balance it was decided against attempting this. The researcher was, however, present for the recording of three consultations at the beginning of the data collection period, in order to observe the setting in which the consultations were carried out and to view the way in which different activities within the consultations were dealt with by clinical geneticists or genetic counsellors. The remaining consultations were recorded in her absence. The data were transcribed using the standard method of conversation analysis (CA) notation developed by Jefferson, as reproduced in Atkinson and Heritage (1984), and a detailed turn-by-turn analysis of each consultation was carried out using CA methods.

CA is a sociological approach which examines the moment-to-moment organisation of interaction through talk, and the way in which each utterance is both context shaped (organised in the light of the prior action) and context renewing (framing the next action) (Heritage 1984). It is distinctive in providing the opportunity to focus on members’ own displayed orientations to social action. In addition, by treating talk as a two-way and dynamic process which is used to accomplish particular tasks, it avoids the fragmentation and categorisation which is necessary to apply the kinds of psychological scales that have been discussed above. As a result, a CA approach enables examination of the ways in which the activities of genetic counselling are produced and managed in situ. (For a fuller explication of CA, see Sacks 1992, Sacks et al. 1974.)

Of the 15 consultations that were recorded, nine extracts taken from only four are reproduced here. Whilst these four sets of clients represent a range of stages of involvement with genetic services and give a reasonable indication of the kinds of genetic conditions that are discussed in genetic counselling sessions in this particular setting, they have not been selected as representative in a formal sense. Instead, they have been chosen to demonstrate some of the interactional difficulties that may arise during the counselling process. Highlighting these difficulties demonstrates the utility of studying the communication process itself in identifying areas of practical concern. It also facilitates an exploration of how these difficulties occur in practice, and whether they are related to the way in which the activity of genetic counselling has been defined and framed by researchers and practitioners.

This paper now moves to consider four key interactional difficulties that arise in genetic counselling consultations: setting an agenda; knowing what is relevant for a particular client; managing different activities within counselling; and managing the multiple perspectives of clients. Whilst these four areas are not meant to represent an exhaustive list, it will be argued that the way in which genetic counselling as process is organised, and the different interactional contingencies it involves, make them likely to recur across consultations.

Finding a starting point: the difficulties of setting an agenda

The issue of agendas in genetic counselling is a contentious one. It is linked to the ideal of non-directive counselling, which originates from the writings of Carl Rogers on client-centred therapy and is widely accepted in the practitioner community. Non-directiveness is widely understood to mean that the role of the genetic counsellor should be that of information provider, rather than decision maker. For counselling to be non-directive and client-led requires that the client identifies those issues of concern to them and uses the information provided by the counsellor to arrive at a decision appropriate to their particular situation. Clarke et al. (1996) state that the ethos of genetic counselling is for the client to set the agenda, and that as a result of this, the first element of genetic counselling should be listening. There is, however, evidence that this does not always occur in practice. Reviewing findings from research studies on the communication process, Kessler asserts that ‘We know with some certainty that the agendas of counselors and those of counselees are frequently discordant’ (1992: 6). The suggestion here is that genetic counsellors may not be giving sufficient attention to the major issues on the minds of clients, and that they may be too strongly wedded to their own agendas to allow any easy discussion of clients’ concerns. Achieving an accurate knowledge of individual genetic risk, for example, may be more important to a counsellor who sees transmitting this information as part of their role than it is to a client who has already made their reproductive decisions and is concerned about whether they may have passed a disorder on to their children. Kessler concludes that ‘One of the things we need to know more about is how counselors set the counselling agenda, and the degree to which counselees can find an entrée and receptiveness in presenting their individual questions and concerns’ (1992: 6).

In the data collected from the clinic, counselling sessions commonly opened with a summary of previous events from the counsellor or clinical geneticist, in order to topicalise or make relevant an appropriate starting point for the consultation. This is evident in the extract below:

Extract 1: D17 1 97

(The transcript commences following introductions. Those present are the clinical geneticist (G), genetic counsellor (C), the client (P) and the researcher).

12 G: Right, thankyou for coming so promptly

13 (0.6)

14 P: [That’s alright

15 G: [It

16 (.)

17 G: It was Mr Bloggs that wrote to us saying (.)

18 Erm (.) (they knew) (.) and can we have a chat

19 about the chromosome (.) [result of the count (.)

20 P: [yeah

Here, the clinical geneticist explicitly states the reason for the patient’s referral from another medical specialty, and sets out a provisional agenda for the consultation, in terms of a ‘chat’ about the test results that have been received. Although an agenda of sorts, in the sense of a proposed purpose of and topic for the discussion is introduced, it is presented as highly informal, and the use of ‘we’ in line 18 suggests a collaborative process. Before this can take place, however, the geneticist adds a secondary agenda:

Extract 2: D17 1 97

21: G: What I (.) what I want to do today, and I’ll probably

22: do this (.) quite near the beginning is actually (.) to

23: examine you (.) and measure your heart (0.4) your

24: heart and things (.) Erm, and then (.) I’ll

25: sort of explain the chromosome (.) result and (.) put

26: it into context (.) for you

27: P: Mmm

28: G: Is that (.) alright?=

29: P: =yeah (yes)

The secondary agenda is a physical, medical examination, which the geneticist wishes to carry out before proceeding with the ‘counselling’ section of the consultation. However, the counselling agenda which follows on from this in lines 24–26 is this time raised in terms of what the geneticist will do for the client, rather than as a collaborative agenda. Whilst this might suggest an insensitivity to issues the client may wish to raise, the exchange which occurs immediately afterwards illustrates some of the practical difficulties which can impinge upon agenda setting in this context:

Extract 3: D17 1 97

30: G: Before I start though (.) can I ask (.) what you’ve

31: been told about the chromosome (disorder) (.) what

32: you’ve learnt about it?

33: (0.3)

34: P: (laughs) Oh

35: (0.4)

36: P: [well

37: G: [So Mr Bloggs didn’t go into [it

38: P: [Mr Bloggs didn’t

39: say anything (.) no=

40: G: =in much detail =

41: P: =no (.)

42: G: OK that’s fine. I mean I (.) I was going to go right from

43: the beginning (anyway) (.) [but erm

44: P: [ye:ah yeah

45: G: I (.) you know (.) I just wanted to know er (.) what-

46: what you’d [understood

47: P: [Yeah

The geneticist opens this segment by explicitly attempting to elicit client knowledge of her condition, in order to provide a starting point for discussion. However, this attempt is greeted by silence and then laughter from the client, suggesting that her knowledge is at best minimal. This lack of knowledge is subsequently provided for by the geneticist’s suggestion in line 37 that Mr Bloggs, a consultant, did not cover the topic ‘in much detail’ (which contrasts interestingly with the client’s assertion that he ‘didn’t say anything’ in lines 38–39!). As a result of this failure to establish an appropriate starting point based on the client’s expressed perspective or existing knowledge, the geneticist proposes that he will go ‘right from the beginning’ (lines 42–43). The difficulties of establishing a collaborative or client-set agenda from the outset are clearly illustrated here: genetics is a complex and technical subject area, and even if they do not lack the basic knowledge, clients are unlikely to possess the specialist jargon to describe that knowledge. Further, in the absence of this knowledge, it is difficult if not impossible to know what will constitute a relevant and appropriate topic for discussion in this setting.

It should be noted that these issues are perhaps exacerbated in this particular consultation since the client has been tested for a genetic disorder that has not previously been apparent in her family. As such, she has had no previous experience with genetic services in the clinic, and has no access to the body of knowledge that is often in existence in families with an established genetic disorder. However, even in circumstances where there is an established disorder, the interactional practicalities of establishing a client-led agenda can be problematic, as in the extract below. This extract is taken from a consultation with a young man with a family history of Huntington’s disease, who has made initial inquiries about being tested to see if he has the affected gene. As the initial exchanges show, he has already consulted both a consultant psychiatrist and a genetic counsellor prior to this meeting. The participants are a clinical geneticist (G) and the client (P). Sarah is a genetic counsellor, and Dr Smith is the psychiatrist.

Extract 4: E31 1 97

1: G: [[following greeting sequence]]. Grand (.) E:::r (.) Sarah’s (.) told me

2: the gist of (.) (a) couple of things you discussed

3: and of course Dr Smith (.) said in

4: the letter that (0.2) e:::rm (.) y-your late father

5: had Huntington’s disease and [that

6: P: [mmm

7: (0.3)

8: G: you’d thought things through and I think he

9: (0.2) prompted things a little bit when he (.) he

10: asked you some leading (hhh) questions=

11: P: =yeah (.) [and

12: G: [and you thought things through and

13: you wanted just to find out a little bit more

14: and (.) look ahead t-e:rr an’ an’ and consider

15: the (0.2) pros and cons of sort of (.) e:r (.)

16: what the next step might be (0.3) Can (you)

17: just ask? (.) Have you got any (.) extra

18: questions that (.) if (.) you want to add to (.)

19: the obvious list (.) that=

20: P: =U::m (.) not (.) not (that I think of the moment)

21: (0.3)

Here again, the consultation opens with a summary of events to date and a proposed general agenda which is presented very much in terms of the client’s wishes (‘and you thought things through and you just wanted to find out a little bit more’ in lines 12–13, emphasis added). Subsequently, in lines 17–19, the geneticist explicitly invites the client to add specific items to the ‘obvious list’ for discussion. Two points are worth noting here. The first is that, in order to add points to the ‘obvious list’, the client must first have some knowledge of what that list already contains. Though he has already discussed the possibility of testing with a consultant psychiatrist and has received a home visit from a genetic counsellor, it may not be immediately apparent to him how any issues covered in these previous discussions could or do relate to the present consultation. The second is that, since the list has been described as ‘obvious’, there are considerable interactional difficulties relating to face and competence in any admission of ignorance or request for clarification of this list. The client’s response attends to this delicacy by leaving open the possibility that, although he has nothing to add to the list now, he may do so at a later point.

Knowing what is relevant for a particular client

Already then, even the opening sequences of genetic counselling consultations give us some idea of the very real interactional difficulties that are apparent in relation to the activity of genetic counselling. These difficulties persist in other stages of the encounters, and can become even more problematic, as in the example below. The following example is again taken from the consultation with the young woman with no known family history of genetic disorder. Testing in her case has proved somewhat inconclusive, in the sense that although a genetic mutation has been identified, it is not one that corresponds exactly to any known syndrome or disorder. Having explicated some basic biological terminology in order to describe the anomaly which has been detected in the client’s chromosomes, the counsellor describes the condition as below:

Extract 5: D17 1 97

162: C: But having the little bit missing (0.4) is e:rm (2.0) it’s

163: (1.0) well it’s (.) I don’t know if you’ve heard the

164: term Turners (.) Syndrome (.) [have you?

165: P: [Ah yes, yes

166: (1.0)

167: C: OK (2.0) It’s not quite the same (.) but the most

168: common form of (.) Turner’s Syndrome (.) Syndrome

169: just means a (.) number of features that you see together

170: P: Yes

171: (1.0)

So, the chromosomal abnormality which the client has is presented as being similar to Turner’s Syndrome, although ‘not quite the same’ (line 167). Interestingly, although the client is asked whether she has heard of Turner’s Syndrome, and replies that she has, she is not asked to elaborate what she has heard, or what she understands about the condition. In the subsequent lines of the consultation, the counsellor proceeds to elaborate on some of the physiological manifestations of Turner’s Syndrome, namely heart problems and reduced height. Neither of these are present for this client, and the counsellor continues as follows:

Extract 6: D17 1 97

189: C: (1.0) But the most important aspect

190: of Turner Syndrome is that (.) a lot of people actually

191: don’t have (0.8) periods at all (0.4) E:rm

192: (2.0)

193: C: You’re (.) a little bit different (.) because you haven’t got

194: the whole thing missing (.) you’ve just got a tiny little bit

195: missing (.) But you had had (.) periods=

196: P: =Mm

197: C: and er (1.0) that means that you have produced (.)

198: some eggs

199: P: Mm

200: C: E:rr

201: (2.0)

202: C: But (.) people with full Turner Syndrome don’t have

203: periods at all and find themselves not able to have

204: children of their own (2.0) Now I think one

205: of the important things to think clearly yourself is that you

206: can’t be certain about that aspect of (.) yourself (.)

207: I don’t know if Dr Bloggs went into

208: [that in any detail=

209: P: [No

210: P: =No

211: C: E:rm (1.0) Certainly if you’ve had periods and you can

212: (.) produce eggs (.) you may be able to have children of –of

213: your own accord (.) and I don’t ever want to take that

214: hope [away from you=

215: P: [No

216: C: =E:rm (.) and there are (2.0) cases in the literature of (.)

217: families where it’s (.) gone through (.) some are very similar

218: where there’s a bit missing and an extra bit (.) who have

219: children themselves and it’s been passed down through

220: the family (2.0) Some of those (1.0) there haven’t

221: ever been a problem with periods (.) they sort of come at

222: the right time and (.) occurred [every month=

223: P: [yeah

224: C: =which I think is a bit different from yourself

225: (1.0)

226: C: So (.) I think (.) there’s always that hope there if you

227: have periods and erm (.) are normally producing eggs

228: P: Mm

229: C: But (.) I think we must also (.) because we know that

230: (.) Turner’s Syndrome can cause (.) or is associated with

231: difficulty having children (.) we need to think about that

232: early so that if you need (2.0) treatment or if e:rm

233: (1.0) perhaps other forms of (.) having children such as

234: (1.0) egg donation (.) I mean we can [per=

235: P: [yeah

236: C: =erm perhaps think about that (.) if a baby

237: does become (.) if it’s important for you in the future to then

238: (.) The important thing is that it’s picked up now (.)

239: so that any treatment can be given (.) at a much

240: earlier stage

241: (0.6)

242: P: Mm

243: (2.0)

This extract begins with an explanation of what the counsellor calls ‘the most important aspect of Turner Syndrome’ (lines 189–190), namely the lack of menstrual periods. This is not the case for the client, since it was the irregularity of her periods that led her to seek medical help initially, and this utterance is greeted with a prolonged silence in line 192. The limited applicability of this statement is subsequently acknowledged by the counsellor in line 193, both in genetic terms (‘You haven’t got the whole thing missing’) and in physiological terms (‘But you had had (.) periods and er (1.0) that means that you have produced (.) some eggs’). This utterance produces a minimal response token from the client, and after a significant pause, the counsellor explicitly raises the issue of infertility, in lines 202–204. Once again, the applicability of this issue to the client is uncertain, and once again, this uncertainty is formally addressed by the counsellor. The client’s response at 209 and 210 suggests that this is the first time the issue of infertility has been raised with her, but she does not expand on this utterance. Following this, at 211, the counsellor begins a sequence of what might be called ‘hope work’ (Perakyla 1991), by emphasising the positive aspects of this particular client’s history. Immediately afterwards, however, she contrasts positive cases in the literature with the client’s specific situation, by suggesting that these are ‘a little bit different from yourself’ (lines 224–225). This utterance is also greeted by silence from the client, and the counsellor reverts to the notion of hope, which is minimally acknowledged. At this point, the counsellor topicalises the issue of infertility treatment (lines 231–234). This is ostensibly raised in a collaborative fashion, as something ‘we’ need to think about. The issue of infertility, however, has been added to the agenda by the counsellor, and there has been no indication in the client’s responses either that it is an issue for her, or that it is one which she wishes to discuss in this setting. The counsellor’s subsequent utterance partially attends to this by acting as a mitigator, where ‘need to think about that early’ in line 231 is softened to ‘perhaps think about that’ and ‘if it’s important for you in the future’ in lines 236–7. Once again, this utterance is received minimally by the client, followed by silence.

This extract is interesting for a number of reasons. First, it appears to be a clear example of a counsellor’s assumption of the relevance of a particular issue prior to any attempt to establish whether this is in fact the case. As a result of this assumption, a solution to the proposed problem (of infertility) is also formulated. In understanding this sequence, Bosk’s comments in relation to paediatric genetic counselling services seem appropriate. He states that:

To borrow from Merton (1957), if genetic counselors are cosmopolitan when understanding genetic disease, patients are locals. In everyday terms, this means that genetic counselors’ explanations are framed in universal terms. They are valid not just for the current couple receiving counseling, but for all patients in this disease category. Explanations are focused on abstract, impersonal, biological processes. Conversely, parent understandings are very specific and personal. They are fashioned out of highly situated understandings for this particular pregnancy, this particular family, this particular person (Bosk 1992: 48).

This comment perhaps sheds some light on both counsellor and client utterances in this extract. For the counsellor, Turner’s Syndrome is a disorder where infertility is a likely biological consequence. Additionally, it is presumably often an issue for affected clients, and one that they wish to explore during counselling. In this sense, the counsellor can be seen to be producing general information of a kind that people in this disease category might reasonably be expected to want. Since many clients are under-informed about the nature of a particular condition until their contact with genetic services, they may not always be in a position to identify the sorts of issues it would be appropriate to discuss. As we have seen in the opening extracts of this paper, inviting clients to specify their concerns does not always achieve the desired result. In these circumstances, then, counsellors may feel obliged to raise what they know from experience are frequently important issues for particular client groups. However, by raising these issues, they may find themselves in conflict with the over-arching goal of client-led genetic counselling.

Managing different activities within genetic counselling

It is also important, however, to reflect on the kinds of activities that genetic counsellors are carrying out in these encounters, as well as the ways in which they are carried out. Although the client in the previous two extracts is aware at the outset of the encounter that a chromosomal abnormality has been discovered in her test, the purpose of this consultation is primarily to explain that abnormality. In this sense, what the counsellor does in Extract 5 may best be described as the medical activity of a diagnostic news delivery (Maynard 2000). In their work on delivering and receiving diagnoses of development disabilities, Gill and Maynard (1995) describe a ‘syllogistic’ way of presenting a diagnosis. They describe how a syllogism contains a general (major) premise followed by a particular (minor) premise and a conclusion, giving the example:

  • 1general premise: all children are funny;
  • 2particular premise: Jimmy is a child;
  • 3conclusion: Jimmy is funny. (Gill and Maynard 1995: 17.)

They also note that in delivering diagnoses, clinicians may proceed either from the general to the particular, or vice versa. In either case, however, the conclusion is not explicitly stated, but is left for the client to draw. This kind of syllogistic delivery can be seen in Extract 5, where the client, having been informed that she has a chromosomal anomaly, is then informed that the anomaly is associated with, though ‘not quite the same’ as Turner’s Syndrome (Maynard 2000). The implicit conclusion is that the client has a condition associated with Turner’s Syndrome, though this is never explicitly stated. Thus, the subsequent part of the interaction, in extract 6, needs to be considered in the light of this diagnostic presentation.

Returning to Bosk’s (1992) argument, then, for the client in this case, the situation is even more complex than Bosk describes. The events in extract 6 follow a diagnostic news delivery, and this may account for the lack of response from the client. Other CA research in medical settings has demonstrated that silence, or minimal responses, are common reactions from patients following the delivery of a diagnosis (Heath 1992). The counsellor’s apparent imposition of an agenda item also needs to be understood in this light; in everyday medical encounters between health professionals and their clients, the delivery of a diagnosis is usually followed by a proposal for managing or treating the condition which has been identified. However, the framing of this session as ‘genetic counselling’, with the implied goal of a client-led agenda, is in conflict with this routine expectation. In addition, the diagnosis that is produced here is not a definitive one. Silverman’s (1997) study of advice giving in HIV clinics makes the distinction between utterances that are produced in relation to a specific person, and those that relate more generally to ‘people in a class’. The implication is that it is possible to hear something that is produced as a general statement about members of a class as personal, by virtue of belonging to that class. Kinnell and Maynard (1996) describe how HIV counsellors deal with similar contingencies by using a ‘proposal of the situation’, where an utterance formulated for ‘some people’ who engage in a particular kind of sexual behaviour can be received as general information, or as personal advice. Relevance to the client is contingent upon whether the client is involved in the hypothetical scenario. However, for this genetic counselling client, this personalisation is not an option, since she has already been told she does not fit completely into the class of people with Turner’s Syndrome. As a result, it is uncertain whether her fertility is in question, and even more questionable whether infertility treatment is an issue she would want to discuss at this point. In other words, the transformation of this utterance from a general one into one affecting a particular person is problematic not only in terms of whether the client sees this as a relevant issue, but also in terms of the applicability of the information.

The issue of potential mismatch is eventually raised by the client herself. Following an explanation as to what the hormone treatment (which would be carried out by another doctor, Dr Jones) would involve, and how this differs from the alternative of egg donation (these utterances are all also minimally acknowledged), the counsellor moves to conclude the session:

Extract 7: D17 1 97

314: C: Well that (.) that’s basically it (1.0) E:rm (1.0)

315. Is there anything that I haven’t made sense with

316. first of all that e:r (2.0) you want to talk about?

317. (1.0)

318. P: E:rm (.) the (0.6) treatment[that you said that Mr Jones=

319. C: [Mm

320. P: =will give me (.) e:rm

321. C: I mean [he did a (.)

322. P: [if

323. C: Yeah

324. P: If I decide to have it

325. C: Yeah

The question that follows on from this utterance by the client in line 324 is whether the hormone treatment will have any effect on the client’s chromosomes. However, what is significant in terms of the discussion in this paper is the way in which the question is prefaced by the client: ‘If I decide to have it’. Although the counsellor has formally displayed an orientation to the client’s wishes previously, in lines 236–240 (Extract 6), the available fertility treatment has been discussed largely as a consequence of potential infertility, rather than as an option (for example ‘we need to think about that early so that if you need treatment’, emphasis added, in lines 231–2). In this utterance, then, the client demonstrates the potential difference between the way in which events have been formulated by the counsellor and her own intentions, by explicitly asserting her right to make the decision.

Managing the different perspectives of family members

Thus far, the discussion has centred on interactional difficulties arising between client and counsellor or geneticist. By their very nature, however, genetic disorders can and do implicate not just a single individual, but also that individual’s family. In the clinic where the data were collected, it was not uncommon for several members of the same family to present for counselling simultaneously. When this occurs, the possibility of competing perspectives amongst family members as to what will be considered appropriate topics for discussion, or appropriate subsequent actions, becomes evident. In the following extract, a woman in her 30s (marked in the transcript as P) has come to discuss the possibility of being tested for the genetic mutations associated with breast cancer. Two maternal aunts (Christine and Margaret), her sister (Irene) and a maternal grandmother have previously had breast cancer, but there is also a family history of other cancers on her father’s side. The woman’s mother (M) has also come to the consultation. This is a lengthy consultation, and for reasons of space, only a short portion of it has been reproduced here. However, in the opening section, which is not reproduced here, the genetic counsellor (C) has spent a considerable time eliciting an accurate family history from the two women. She has then discussed genetic knowledge about breast cancer, with a particular emphasis on risk factors, which is where this extract begins:

Extract 8: BPM23 1 97

1628: C: Even with the gene then there’s still only eighty=

1629: P: =percent

1630: C: Yeah

1631: P: [that you’ll ever=

1632: M: [yeah but

1633: P: =develop [it=

1634: C: [mm

1635: M: =Well it’s (.) say me mum passed it on to me

1636: C: Yeah (3.0) It may be that it’s [skipped through you=

1637: M: [er-I [it’s

1638: P: [it’s skipped

1639: C: =and gone through [to Irene

1640: M: [‘cause I mean (2.2)

1641: the dad died of cancer so (1.4) [what I’m=

1642: C: [I

1643: M: =trying to figure out is [have I passed=

1644: P: [it-w-it

1645: M: =[it (.) have I passed it on?

1646: C: [is

1647: C: I think [that

1648: M: [to Irene or (.) would it be her dad’s

1649: [gene that

1650: C: [well I think the (.) I’d like to look into that in

1651: more detail (.) but the sort of cancer that (.) your

1652: husband had (.) e:rm isn’t usually one that we see

1653: in families [It’s usually something (.) that occurs=

1654: M: [No

1655: C: =an-and can occur at very young age=

1656: M: ye:ah

1657: C: but it’s not usually hereditary

1658: M: Mm

1659: (0.3)

1660: C: I think from what you’re describ[ing=

1661: M: [yeah

1662: C: =so I’ll try and look into it in a bit more [detail

1663: M: [yeah

1664: C: But that wouldn’t bring in (.) Margaret and (.) Christine then=

1665: M: =no (.) course it wouldn’t (.) [no

1666: C: [so erm

1667: (0.6)

This section of the consultation is obviously a very difficult one for the counsellor. The discussion which has preceded this segment has been couched by her in very abstract and impersonal terms, in relation to the risk of the general population of developing breast cancer and the risk of people who have this gene. In line 1635 however, the mother begins to apply this information personally, to her own family situation. She has not herself developed breast cancer, and at the age of 60, is unlikely to develop a hereditary form of the disease, which is generally categorised by a much earlier onset. It is presumably this fact to which the counsellor attends, in lines 1636–9, where she suggests ‘It may be that it’s skipped through you and gone through to Irene’. However, in attempting to explain what might appear to be an anomaly, there is an implicit suggestion of responsibility (in a genetic sense) for Irene’s condition. The mother’s next utterance immediately attends to this, by restating that her husband (and the father of both daughters) died of cancer: the possibility of his passing on the gene is eventually explicitly formulated in lines 1648–9.

Kessler et al. (1984: 674) describe how ‘Genetic counsellors frequently need to deal with guilt and/or shame states during the course of genetic counselling …’ They suggest that the ascription of personal responsibility in the face of discovering that a child has an inherited genetic disorder is a natural response to an event over which a parent has little or no control. This feeling of personal responsibility commonly results in expressions of guilt or shame, and a need to apportion blame. This desire to establish personal responsibility (or the lack of it) can be clearly seen in the extract above. The counsellor’s response to the mother’s direct question about who has passed on the gene attends to the delicacy of the situation, by first suggesting that she would like more details before giving a definitive answer. She goes on to suggest that, although her husband had cancer, this is unlikely to have been hereditary, whilst still stressing that she will investigate further (line 1662). Finally, she proposes a difficulty with the mother’s proffered explanation, in that it would fail to account for the occurrence of breast cancer in the mother’s sisters. It is at this point (line 1665) that the mother concurs with the counsellor’s view. However, this view has never been directly stated, but has been implied through a stepwise undermining of the mother’s suggestion. As well as highlighting the delicacy around these issues then, this extract illustrates the difficulties that can arise in genetic counselling sessions with multiple clients when these clients bring different perspectives to the encounter. Whilst the daughter’s primary concern, as expressed at the outset of the consultation (though not reproduced here) is to decide whether or not she will undergo genetic testing, her mother, at this point at least, appears to be more concerned with accounting for the possible presence of the genetic disorder in the first place.

Other kinds of difference in the perspectives of family members may occur around the decisions they choose to make in relation to genetic testing. The following extract is taken from a consultation with a family who have a son with Fragile X Syndrome. The daughter, Sharon, (P), who is aged 19, has previously attended for counselling and testing, which has shown that she is a carrier of the affected gene. She has come to this session with her parents (F = father, M = mother), in order to discuss, as the counsellor (C) puts it, ‘What that might mean for you’. At the point at which the extract below opens, the counsellor has been discussing the possibility of two types of antenatal testing to determine whether any subsequent pregnancy that Sharon might have is affected (chorionic villus sampling (CVS), and amniocentesis), and is now explaining the potential risks of miscarriage associated with testing:

Extract 9: C23 1 97

335: C: And with the amniocentesis later

336: on it’s around two percent (0.6) And with the CVS earlier on it’s around one percent (0.4) E:rm so you know

337: it’s-unfortunately there isn’t a (.) test that (.)

338: doesn’t=

339: F: =huhh=

340: C: hold any risks but e:rm=

341: F: =I think one or two percent risk [is er

342: C: [mmhmm

343: (0.8)

344: C: mm

345: (1.4)

346: F: [small enough I say as just a (0.4) child’s blood=

347: C: [yeah

348: F: =isn’t it

349: (0.3)

350: C: Well (.) you weigh that up against the risk of there

351: being a problem and de[cide

352: F: [that’s it=

353: C: =obviously it’s for Sharon and her partner to

354: decide if that-if they want to-to do that. There’s

355: a lot of experience with both techniques certainly (.) and

356: you know (.) e:rm the earlier on they’re [done

357: F: [it’s a tiny

358: amount of risk (.) weighed [against trying to=

359: C: [mm

360: F: raise a [handicapped child [for the rest of=

361: C: [mm [mm

362: F: =their lives

363: C: Mm

364: F: I mean (.) I [think one outweighs the other a great deal=

365: C: [mm

366: F: =but

367: M: huhh that’s right

368: C: well (.) there’s-there are no rights and wrongs in these

369: situations (.) some people (0.4) [are dead against (.)=

370: F: [yeah

371: C: =testing things at all (.) other people (.) really want to

372: know an-and (.) this (.) what you (.) whatever you (.)

373: wanted to do [you know what I mean (.) yeah

374: F: [yeah

What is instantly striking about this section of the consultation is that the daughter does not speak in it at all. Following the counsellor’s explication of the risk associated with prenatal testing, which is framed in terms of the fact that all such tests have potential risks, the father intervenes to state his opinion that this risk is ‘small enough’ (line 346). His continuation, ‘just a child’s blood’, illustrates his representation of the testing procedure as a straightforward and uncomplicated one. He also seeks agreement for this utterance from the counsellor. Her response to this solicitation is emphatically neutral, making it clear that this is a personal decision to be considered. Again, at line 352, the father voices his opinion, this time by subverting the end of the counsellor’s utterance so that it is ostensibly in agreement with his viewpoint (‘well you weigh that up against the risk of there being a problem and decide- that’s it’). This is evidently hearable to the counsellor as a threat to her professionally neutral position, and her steering away this second time is less gentle. On this occasion, she explicitly formulates the decision as not just a personal one, but one for the daughter (Sharon) and her partner to make. At 357–364 however, the father restates his position again, this time drawing on his first-hand experience of raising a child with profound learning disabilities in order to give weight to his views. This is reinforced by his wife’s utterance in line 367. Finally then, in lines 369–73, the counsellor takes a different tack, by explicitly invoking an alternative viewpoint to that held by the father and contrasting this with his own. She concludes again by emphasising that this is an issue of choice. At this point the father concurs, and the discussion of this issue concludes.

This section of the consultation raises a number of potential problems for the counsellor. Not only is it dominated by the father’s viewpoint, to the extent that there is no utterance at all from the daughter in this section, but the father’s viewpoint is drawn from and reinforced by personal experience. In addition, the father’s expression of his views potentially threatens not only the choices of his daughter in relation to testing, but also the professional neutrality of the counsellor. As a result, the counsellor’s steering of the father away from his expression of these viewpoints becomes progressively more forceful. The interactional difficulties in this consultation arise not from a counsellor-imposed agenda, but from multiple clients who potentially have different viewpoints in relation to genetic testing. The result is a course of action proposed by one client and supported by another, which fails to take into account, or to provide any opportunity to take into account, the views of the third client who is the actual recipient of the diagnosis.

Conclusions

Although talk that may be broadly identified as agenda setting by counsellors does occur in these consultations, the data presented here suggest that this may not arise out of ‘bad practice’ on the part of genetic counsellors, or out of a desire to specify the topics which will be considered in consultations, but instead by default, as a result of a client’s unwillingness or inability to do so. If a client does not know what will be considered relevant in a particular situation, or does not have sufficient background knowledge to formulate appropriate questions, the goal of client-led genetic counselling ultimately becomes interactionally unachievable.

In addition, previous research has largely drawn attention to possible conflict between counsellor/client agendas, but as the latter extracts reproduced here demonstrate, competing perspectives amongst different family members are also potentially important. If a consultation is to be client-led, the existence of multiple clients raises the question: by which client? These findings underline the need for more research examining the actual process of genetic counselling in detail to gain a clearer idea of the interactional dilemmas counsellors face in day-to-day activities, since if genetic counselling is to be defined as a communication process (Lindhout et al. 1991), then it can only be fully understood when studied as such.

This consideration of genetic counselling as a communication process also needs to take into account the different interactional activities which are covered by the term. The extracts presented here illustrate how the work of genetic counsellors may encompass anything from facilitating decision making in relation to genetic testing through to diagnostic news delivery, and subsequently giving information on available treatment or management options. Whilst counselling is the term used to describe all these activities in this setting, it is suggested that only some of them are easily reconciled with the client-led ethos to which genetic counsellors aspire. This client-led ethos grows out of a counselling paradigm that is in sharp contrast to the typical organisation of knowledge and interactional behaviour in medical encounters. In particular, it has been argued here that diagnostic news delivery is an activity much more commonly rooted in a medical rather than counselling framework, and that any subsequent direction of the encounter by counsellors needs to be understood in this context. One of the reasons why genetic counsellors may appear to give advice or suggest courses of action in the face of the stated aim of non-directive counselling may be due to this ambiguity of role.

In considering the need for further research, it is also important to reflect upon the limitations of the data collected for this preliminary study. Whilst all the data presented here are drawn from encounters in a series, they are essentially composed of isolated consultations within the series, and so do not capture the ways in which these encounters relate to one another. For examining a topic such as agenda setting, or understanding how multiple clients’ perspectives are dealt with and resolved, this issue may be of particular importance, since the examination of process may justifiably be taken to require inter- as well as intra-consultation analysis. To date, analysts taking a CA approach and researching in medical settings have tended to focus on episodic encounters (e.g. GP consultations) rather than long-term relationships such as those that can develop in genetic counselling (Pilnick 1998). It is suggested here that there is a need to move towards longitudinal studies of counselling, in which we can how, and to what extent, its component activities are achieved over the course of a series of encounters examine.

Address for correspondence: Alison Pilnick, Genetics and Society Unit, School of Sociology and Social Policy, University of Nottingham, Nottingham, NG7 2RD e-mail: Alison.Pilnick@nottingham.ac.uk

Acknowledgements

The author would like to thank all those counsellors and clients who generously consented to the taping of their sessions. Thanks are also due to the counsellors who commented on the first draft of this paper - their insightful and challenging comments played a significant role in its development. Rachael Finn and Jessica Ive carried out the initial transcribing of these consultations, and offered many useful observations for analysis. Robert Dingwall’s input to an earlier draft was extremely helpful, as were the comments of Carl May and the other, anonymous, referee. Doug Maynard’s suggestions for developing the analysis were invaluable.

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