There are no rights and wrongs in these situations : identifying interactional difficulties in genetic counselling Alison Pilnick

Transcription

1 66 Alison Pilnick Sociology of Health & Illness Vol. 24 No ISSN , pp There are no rights and wrongs in these situations : identifying interactional difficulties in genetic counselling Alison Pilnick School of Sociology and Social Policy, University of Nottingham 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. Keywords: genetic counselling; conversation analysis; lay/professional interaction 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. Published by Blackwell Publishers, 108 Cowley Road, Oxford OX4 1JE, UK and 350 Main Street, Malden MA 02148, USA.

2 Identifying interactional difficulties in genetic counselling 67 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 decisionmaking 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

3 68 Alison Pilnick 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

4 Identifying interactional difficulties in genetic counselling 69 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

5 70 Alison Pilnick 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 ) 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

6 Identifying interactional difficulties in genetic counselling 71 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 clientled 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: D (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

7 72 Alison Pilnick 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: D : 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 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: D : 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

8 Identifying interactional difficulties in genetic counselling 73 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 clientled 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: E : 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

9 74 Alison Pilnick 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:

10 Identifying interactional difficulties in genetic counselling 75 Extract 5: D : 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: D : 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=

11 76 Alison Pilnick 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 ), 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

12 Identifying interactional difficulties in genetic counselling 77 minimal response token from the client, and after a significant pause, the counsellor explicitly raises the issue of infertility, in lines 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 ). 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 ). 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 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