Journal of Genetic Counseling, Vol. 8, No. 5, 1999
Genetic Counseling: Clinical Geneticists' Views Susan Michie,1'3 Jonathan A. Smith,2 Jonty Heaversedge,1 and Simon Read1
Evaluation of genetic counseling requires a clear consensus about its objectives, which is not evident in published definitions and guidelines. This study aims to investigate clinical geneticists' beliefs and thoughts about their practice. Structured interviews with eight clinical geneticists addressed the aims, skills, and expectations of genetic counseling. Analysis of transcribed interviews revealed four key themes, with contradictory aspects: 1. Providing information that is objective, full, and accurate versus information that is contingent on circumstances and tailored to individual needs. 2. Eliciting emotion and dealing with it directly versus dampening down and containing emotion. 3. Communicating nondirectively versus directively. 4. Expecting to perform a range of sophisticated tasks while having minimal training in the necessary skills to achieve these. These results have implications for the nature of the professional role, the development of training required for it, and the evaluation of genetic counseling. KEY WORDS: Genetic counseling; nondirective counseling; doctor-patient communication; health professionals; attitudes.
INTRODUCTION To develop and maintain effective health care, the behavior of health professionals needs to be considered alongside that of patients. However, the behavior of health professionals is rarely considered systematically by psychologists (Marteau and Johnston, 1990). 1Guy's, King's, and St Thomas' Medical School (King's College, London). 2Psychology Department, University of Sheffield, Sheffield, United Kingdom. 3Correspondence should be directed to Susan Michie, Guy's, King's, and St Thomas' Medical School (KCL), Psychology and Genetics Research Group, Thomas Guy House, Guy's Campus, London SE1 9RT, United Kingdom; e-mail: [email protected]. 275 1059-7700/99/0800-0275$16.00/l © 1999 National Society of Genetic Counselors, Inc.
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We know something about the behavior of clinicians providing genetic counseling, with a documented pattern of extensive provision of technical information, little engagement in social or emotional issues, and a variety of advice and evaluative statements (Lippman-Hand and Eraser, 1979; Michie et al., 1997a; Smith et al., in press; Van Zuuren, 1997; Van Zuuren et al., 1997). In order to understand the behavior of genetic counselors and clinical geneticists, it is necessary to study how counselors view the methods and aims of their counseling. This is important in evaluating genetic counseling, since the effectiveness of the process can only be judged in terms of what it is trying to achieve. Attempts at evaluation have used textbook definitions of genetic counseling as the basis for establishing outcome measures (Michie et al., 1996). An alternative approach to ascertaining objectives is to ask those who provide the service. One study that has done this has compared the views of service providers, users, and purchasers (Michie et al., 1998). Using the questionnairebased Delphi technique, this study found that the five most frequently cited and highly ranked objectives were, in descending order, to (1) provide information, (2) give support, (3) facilitate decision making, (4) assess risk, and (5) achieve understanding. The present study sought to investigate, in more detail, clinicians' beliefs about the objectives of genetic counseling. Knowledge of the objectives of a service is essential for its evaluation. Knowledge of beliefs and thoughts about these objectives is important to understand current practice and to change future practice, if evaluation studies suggest that this is desirable. This study aims to investigate clinical geneticists' beliefs and thoughts about the aims and methods of their practice. METHOD Sample Twelve clinical geneticists and genetic counselors from two regional genetics centers were interviewed as part of a postgraduate student research project. When approached two years later, eight gave permission for their interviews to be analyzed for publication. They were all medically qualified clinical geneticists from a regional genetics center outside London. The Interview The structured interview attempted to elicit counselors' and clinicians' views on the aims of genetic counseling and to obtain accurate reports of their behaviors and cognitions during consultations. Three pilot interviews showed the difficulties of eliciting cognitions. Following consultation with cognitive psychologists, the interviews included both open-ended questions about aims, skills, and patient expectations and vignettes with minimal content that addressed particular aspects of
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the genetic counseling consultation: agenda setting, problem definition, information giving, decision making, disagreement, and emotional patients. The interviews lasted about 40 minutes. The Analysis The first four interviews were analyzed by the first author, using interpretative phenomenological analysis (IPA; Smith, 1995, 1996). The aim of this method is to explore the participant's view of the world and to adopt, as far as is possible, an "insider's perspective" of the topic being studied. At the same time, IPA recognizes that this process relies on the interpretive activity of the researcher. The transcripts were read a number of times, and anything of significance was noted in one margin. The next stage identified emerging themes or concepts. The other margin was used to note instances of these in the texts. A tabular document was then produced listing the themes and the illustrative text from all four interviews. The second author read the transcripts and the initial analysis, verified the validity of the analysis, and also identified a further theme. Some of the themes were observed to cluster together (e.g., patient-centered and nondirective communication), and others appeared to be higher-order (e.g., adjusting according to individual difference was seen as a subset of information giving). Four superordinate themes were produced, and other themes that seemed incidental or unconnected were dropped. The second four transcripts were read to establish whether the identified superordinate themes were supported, or disconfirmed by these data. The identified themes were supported, and no new themes were identified. A further document was drawn up providing instances of the themes from all eight interviews. The document and second batch of interviews were read by the second author, and a final organization of the themes was agreed by the first two authors. This final document then provided the basis for the narrative account written by the first two authors and presented in the following results section. RESULTS Our analysis of practitioners' accounts of the skills and tasks required in genetic counseling is organized in terms of four key themes which emerged, each of which can be described as having a contradictory aspect: 1. Providing information. Giving information that is objective, full, and accurate, on the one hand, and giving information that is contingent on circumstances and tailored to individual needs, on the other. 2. Dealing with emotion. Eliciting emotion and dealing with it directly, on the one hand, and dampening down and containing emotion, on the other.
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3. Communicating nondirectively versus directively. 4. Skills and training. The objective of performing a range of sophisticated tasks, on the one hand, and having minimal training in the necessary skills to achieve these, on the other. 1. Providing Information Views about giving information varied from an emphasis on providing information that is correct, balanced, accurate, expert, and "the truth" to an emphasis on contingency. For example, information was often uncertain, it could not be separated from patient expectations or its emotional consequences, and it needed to be tailored to individual abilities and needs. Some responses emphasized the importance of the presentation of full information, and there was an implication that this could be done in a fairly uniform, objective and straightforward manner: They [patients] want information in order to help them make decisions, and they want that information to be accurate and expert. (4, 81)4 So that they can make major life decisions resulting from correct, balanced information. (2, 90)
Indeed, some responses delimited the role of the clinical geneticist as information provider by explicitly ruling out other roles and therefore, implicitly, tasks, which were not part of the job description: I think that is where you have to be very clear what your remit is because you are not a psychologist, you are not a social worker, and just because certain of these services aren't available, I think one has to resist acting out other people's roles. But I think by and large people are coming for accurate information about whatever questions they have got and maybe, as I said earlier, discussion of options. (6, 137)
However, many responses suggested a realization that the presentation of information was not straightforward and was contingent on a number of factors. First, in contradiction to the notion that the task is to give full, objective, accurate information, there is also a recognition that much information is uncertain: That group of patients can be difficult because they are pushing you to your limits of your own understanding and knowledge and sometimes to the limits of what is known. (7, 123)
In the face of the difficulty of not being able to give information which is certain, learning how to give this information becomes a skill in itself: I keep on saying that one of the key things that you learn in genetics is how to say you don't know with confidence, because a lot of time you have to deal with people that you haven't got answers for, and very often you are not providing clear-cut information. (6, 65) 4
Material in square brackets is clarificatory information added by the authors. Numbers in parentheses at end of quotations are identifiers, e.g. (4, 81) means Interview 4, Line 81.
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The degree of uncertainty can create a dilemma for the clinician who has to decide how the uncertainty is to be transmitted to the patient: If a diagnosis is uncertain, some people will give relatively uncertain information. Particularly if you have a child with a dysmorphic problem, parents often want a diagnosis, and therefore an important thing is knowing whether it's good for them to be given a diagnosis and a label that might be incorrect. (2,136)
The uncertainty of the information clinical geneticists can give is then compounded by the fact that patients may be perceived as not knowing what they want to know: I don't always think that when they are referred they actually know what they can actually expect, and once they come through the door, there are still people who wonder exactly what is going to happen and what they actually want of it. I do think that is probably one of the greatest disappointments for them as well, that sometimes we just don't know. (1, 152)
Many of the responses point to a recognition that providing information is a communicative act which is influenced as much by the receiver as the sender. There is a suggestion that it is important to establish the prior knowledge of the patient: One of the main aims is to find out exactly what the patient or the family have already been told and what they understand and what their perceptions are already. (5, 23)
Some responses point explicitly to the need to tailor how and what information is provided to this existing baseline: What I need to do is to tease out their knowledge base and what level I need to give them this information at and try and deliver it in a fashion that is understandable to them and not over their heads, nor under their toes. (8, 162) Ask them what they understand and what knowledge they already have and see what their perception of the problem is, and then I just try as simply as possible to just try and explain the nature of the condition concerned, always checking to make sure that they understand what is going on and, if they look particularly vague, then trying to take it a step back and try and go through it more simply. (5,130)
Further, patients vary in the amount of information they actually want or require, and this may be another factor influencing delivery: I think one has to be sensitive to what they want to know really. I mean I don't believe in hiding anything because there isn't anything particularly to hide. But on the other hand, it's not a question of force-feeding the information that you have got. I think you just have to assess it there and then on the spot, how things are going, how they are taking it, and what they want to know. (3, 146)
Clinicians may also need to make assessments of how much information they believe the patient is able to take: There are very clear limits to what somebody can take in, and so there may be occasions where one feels, well, there is no point in giving a person a whole lot more detail; they have had more than they can cope with already. (4, 211)
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Thus, many responses suggest that providing information is not as straightforward a task as it may first appear. It is, in fact, contingent on a range of factors which can influence delivery and reception. Since giving information is a complicated process, it requires a range of psychological skills. These skills include establishing prior knowledge, assessing how much knowledge patients want, and determining their ability to take in new information and to cope with it. In practice, many of the clinicians' accounts themselves suggest an analytic approach to the simplistic definition of giving information: Well, I suppose one is concerned in giving information as accurate as possible but yet not in so detailed a form that it is not easily understandable. And that goes for risk figures, for instance. And then in terms of information about the disease, again one wants to give a full and accurate picture, but you don't want to be unnecessary alarmist, but equally you don't want to conceal information. (4, 233) In a first instance, you are an information service, but recognizing that information has got consequences to people, and therefore, if you are giving this information, you have to be aware of what impact it might have and then to, with the limitations of your experience and qualifications, help to see people through that information and what it might mean to them. (6, 57)
2. Dealing with Emotion A lot of genetics involves real distress and grief, and there is no doubt that [genetic] counselors must be skilled in coping with it themselves and also helping families cope with it. (7, 66)
While most respondents recognize the importance of emotional expression, their accounts appear to reflect quite different views on dealing with emotion: You sometimes get clues to other problems and issues—so whether or not a particular question is causing tension in the family, whether or not there is an element of guilt from a particular problem, and 1 don't think these should be ignored. (2, 318) This is always the thing that we are dreading and trying to avoid [patient being emotional and tearful]. I personally haven't experienced this sort of thing because of the nature of the condition that I deal with, I suppose. But I can imagine, you know, that would be awful. (3,238)
On the one hand, emotion is something that can provide useful indicators of other problems, and it must be dealt with; on the other hand, emotion is something which can be perceived as difficult to handle and which, it may be hoped, can be avoided. Even when it is recognized that emotional expression from the patient is important, there are still differences in the status accorded such expression. Some clinicians appear to advocate active elicitation: Sometimes those issues [reasons for coming] are genetic, sometimes they are not genetic, and it is just as important to find them out so that they can be dealt with. For example, the genetic issue might be being used as an excuse for causes of marital disharmony. (2, 125)
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Helping the patient to articulate emotional concerns seems an integral part of counseling, and an end in itself. Other accounts are rather different: There are other things interfering with the counseling process, be it high levels of anxiety or unresolved grief that you suddenly tap into, and there I find you're blocked basically. You have got to stop and deal with those issues and then when they're dealt with you can then get back to the counseling issues. (8, 192) I tend to provoke it [emotion] because I think it is important to get it out of the way. So if 1 sense that's there, then I certainly won't be skimming around it. I basically dive headlong into it, knowing that I might be buying quite a bit of trouble and take quite a bit of time. But if you are into effective counseling, I believe you have got to do it. (8, 255)
Here emotional issues seem to be viewed as getting in the way of counseling. Their elicitation is important, but in order to dispense with them prior to the counseling proper—presumably the imparting of genetic information and assistance with the process of rational consideration of options. Other interviewees suggest a less proactive stance toward emotional expression: It's sometimes difficult to say things in that you want to be sensitive; you don't want to necessarily rake up extra distress. (1, 324)
Thus, emotional expression may be important, but respondents differ considerably in their views on how far it is to be actively elicited and whether it is integral to, or lies outside, the counseling process.
3. Communicating Nondirectively Versus Directively The general ethos within genetic counseling supports nondirectiveness. However, in our participants' responses, there appeared to be a variety of views on this. First, the orthodox position, that counseling should be nondirective and can be achieved by not giving advice, is put forward by some: My role is not to make decisions for them. My role is to try to give them as much information as I can in order to help them to make appropriate decisions. I have my personal views, but I cannot force my views on individuals, and no matter how much they push me for that then, I won't advise them. (2,425) What 1 sometimes do is say something like "Yes, I think it would be very difficult being in your position and having to make up your mind about that." (7, 147)
However, other respondents express a very different position: I actually don't feel that that [nondirectiveness] is always the right way forward. So I wouldn't call myself a totally nondirective counselor. And I would also say that I think there are ways either to—if you feel that it would be a shame if they went one route or the other—then you can—may not influence their decision—but you may use things highlighting all the positive or negative aspects or the other way round. So I don't believe
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Thus while insisting that decision making must be for the patient, Respondent 1 suggests it is also possible, even desirable, for the clinician to communicate his or her point of view through the highlighting of particular aspects. Indeed, for some, directiveness can go even further: And then offering advice, if appropriate. (5, 28)
4. Skills and Training A great range of complex psychological tasks were seen as necessary for genetic counseling. We have already seen how the giving of information itself requires sophisticated skills, and this is also true of dealing with emotions and working out an appropriate stance in terms of being directive or nondirective. Two explicit tasks mentioned by clinicians were listening and responding appropriately to different individual people and situations. The "listening" is to both verbal and nonverbal, explicit and implicit messages and also extends to the difficult task of "hearing" what is not said: Probably the most important thing is learning how to listen and learning how to find out what are the real issues. (2, 120) You watch them, you know. You see who is sitting and who is tense and all these sorts of clues as to what is it they want of you at this point. (6, 189) 1 try to listen to what they are saying and also listen to what they are not saying, as much as I can. (8, 146) I would take the family details for a pedigree, and I would use that as a good opportunity, not just to get that information, but to judge, get an idea of what their attitude to the condition is and a lot of things, because it's fairly neutral information which you can be recording. It's a good opportunity to get an idea of some of the ways that they are feeling about things more generally, without having to ask directly about that. (4, 104)
Clinicians also speak of the importance of aiming to assess each individual's ability, level of understanding, and personal views and then tailoring one's behavior accordingly: How one approaches things is always very closely related to the type of person or couple or family one is seeing. So you have to take into account their intelligence, their level of education, their degree of understanding of the disorder, whether they are likely to be able to understand genetic risks, to what extent they have had personal experience of the disease, and to what extent that's colored their views—and basically what their overall attitude to the disorder and the situation is. (4, 131) There is a limit, isn't there, at any one time of how much anybody can take in and understand? One doesn't want to overload them. It varies so much from person to person. (3, 139)
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Despite the great range and complexity of the tasks that clinical geneticists expect to undertake, there appears to be little in the way of explicit techniques used or training for these tasks. The lack of training is seen as a problem in, for example, determining how to assess people psychologically or how to respond to emotion: I think it's very important to be able to pick up the other cues (that you realize that is not exactly what is perhaps the best) at that particular time. But I have had no particular training in that, and 1 know I am not particularly good at that, although it is important. (5, 60) Medics with no training in counseling—I think that [emotionality] is one of the most difficult things really. I would find that quite difficult because I don't think that I will know exactly the best things to say. I know which things 1 certainly won't say, having sat in with a few people where that has happened, but I'm not quite sure that I would do it particularly well really, and I think that is one of the things that I will find most difficult, 1 think, really, dealing with distress. (5, 265)
Respondents do recognize the notion of limits to expertise and the importance of getting support or advice when problems extend beyond these limits: It is very useful to have some support for this, what you perceive as an abnormal reaction, where 1 don't think we are qualified and maybe also have to be very careful how far we explore—because how far can we deliver support? I mean, I think if you're going to do something, you have to know how far you can go. (1, 112)
Of course, skills improve with experience and can be enhanced by postqualification training: I think to begin with you would be rather upset and embarrassed and wondering how to deal with the situation [patient being emotional and tearful], but one hopes that as the time goes on with our psychiatric sessions, we'll be able to learn to cope and think otherwise. (3,242)
DISCUSSION The themes identified in these interviews reflect four main tensions in the tasks and skills of genetic counseling: giving information that is full and accurate, on the one hand, and that is contingent on circumstances, on the other; eliciting emotion versus dampening down and containing emotion; communicating nondirectively versus directively; and a contradiction between aiming to achieve a range of sophisticated tasks and having minimal training to do this. These observations raise two main questions: What is the explanation for these contradictions and what are the implications for the development of genetic counseling? In a recent review, Kessler (1997b) contrasts two models of genetic counseling. The models have different aims: The teaching model aims to end up with an "educated" counselee, while the counseling model aims to leave the counselee psychologically more autonomous and functional. The teaching model is based on the notion that patients come to genetic counseling primarily to obtain information.
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Emotional responses tend to be seen as an interference with the learning process, and so the clinician is likely to avoid or suppress emotional topics and refrain from asking emotionally evocative questions. The counseling task is to provide information as impartially and with as much balance as possible and to correct misinformation. This requires planning how to present comprehensive, clear, and understandable information to the individual and a knowledge of pedagogical skills. The counseling model is based on the notion that counselees come for counseling for complex reasons and the tasks are multiple: to understand the counselees, to bolster their inner sense of competence, to promote a greater sense of control over their lives, to relieve psychological distress, to support and possibly raise their self-esteem, and to help them find solutions to specific problems. This requires a large number of complex skills, for example, the assessment of individual emotional, cognitive, social, and cultural differences; adapting one's communication style in response to this assessment; the ability to monitor the impact of one's communication; and techniques of developing self-efficacy, decision-making, and problem-solving skills and emotional regulation. These two models can to some degree be seen to mirror the tensions we have presented. Thus, presenting full objective information and resistance to emotional expression are consonant with the teaching model of genetic counseling; the tailoring of information to individual needs and circumstances and the eliciting of emotion seem to echo the counseling model. Thus, within their accounts, these clinical geneticists would seem to be influenced by competing models of practice. The contradiction between the push to provide the "full range of facts" at all times and the push to tailor the information to different individuals according to their perceived needs has been documented and discussed previously in genetic counseling (Brunger and Lippman, 1995; Michie et a/., 1997c). If one of the main purposes of giving information is to enable informed decision making, it is necessary for that information to be recalled. One study of genetic counseling found that the medical and technical information that was provided in genetic consultations was recalled less well than the implications of that information for the family (Michie et al., 1997c). This suggests that giving personally tailored information may be a more successful strategy than attempting to provide the full range of potentially relevant information. Some studies have also reported contradictions between what health professionals do and what they say they do, with regard to the provision of information. Differences between observed and self-reported behavior have been found in a systematic literature review of the last 10 years of health professionals giving diagnoses (Elwy, in preparation) and in obstetricians presenting prenatal screening tests (Marteau et al., 1992). Observed practice has been found to differ from selfreport in being more routine, with set phrases (Taylor, 1988), less encouraging of patient question asking (Ford et al., 1996), and stressing individuality less (Turner and Sloper, 1992). In other words, health professionals perceive their behavior to
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vary according to individual patients, while observational studies show that this does not happen in practice. The content of information provided in counseling has been found to be the most important determinant of patient satisfaction (Shiloh et al., 1990). This may reflect a variation in practice along the dimension of "full and accurate" versus "contingent on circumstances." Nondirectiveness is generally considered an important component of genetic counseling (Kessler, 1997c). In a multinational survey of medical genetics, 92-94% of 677 respondents regarded nondirective approaches as appropriate (Wertz and Fletcher, 1988). However, a difference between self-report and practice has been observed in genetic counseling (Michie et al., 1997a). While the majority of genetic counselors rated themselves toward the nondirective end of a rating scale, there was no association between self-reported directiveness and the number of directive statements used. The authors of this study surmised that one of the reasons for advocating nondirectiveness may be a way of dealing with the uncertainties and contradictions of the objectives of genetic counseling. However, this approach poses problems in practice both for geneticists, as illustrated in the current study, and for patients. A study of patient expectations of genetic counseling found that 50% came to the consultation hoping for advice (Michie et al., 1997b). When these expectations were met, patients experienced less concern than when they were not met. Our accounts also point to the difficulty of defining nondirectiveness. One solution to this problem has been to narrow the definition of directiveness to prescription (Antley, 1979) or coercion (Kessler, 1997a) and then maintain correctly that genetic counselors are not directive (Kessler, 1997a). However, this avoids the issue of social influence: Counselors are likely to influence patients, and patients may want to be influenced. For example, one study has found that 50% of patients come to genetic counseling expecting advice, and when expectations for advice and reassurance were met, patients were less concerned and their anxiety level was more reduced than when such expectations were not met (Michie et al., 1997b). A better way forward would seem to be to acknowledge and raise this explicitly within the consultation. Increased awareness of processes is a first step to increased control over them. This would increase patient autonomy more than unsuccessful efforts to achieve nondirectiveness or an uncomfortable knowledge that one's behavior was not consistent with one's professional ethos. What are the implications of our study? There is converging evidence pointing to problems in the definition of genetic counseling. Thus definitions may contain a range of aims and tasks, only some of which are prioritized in practice. This study also points to tensions contained within clinical geneticists' accounts of the aims of practice. More research needs to be conducted on defining genetic counseling. Without clarity about the desired aims and methods of a service, its evaluation is not possible. One way of developing this clarity would be to bring together counselors and clinicians with a range of views and conduct focus groups providing instances
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of contradiction and ambiguity in definition as stimulus for discussion. Groups would be charged with attempting to ascertain whether consensual definitions of genetic counseling were possible and, if not, with suggesting how to deal with this situation. These results also point to the importance of more training in genetic counseling. The apparent contradictions in accounts of practice, in part, point to the difficulty of the tasks involved. Providing information is recognized as a psychologically complex activity, and emotional expression is recognized as an important part of patient behavior. Knowing how to impart information and how to deal with emotional expression is an important skill that require specialist training. ACKNOWLEDGMENTS This study is part of a program of research funded by the Wellcome Trust. Susan Michie is supported by the Wellcome Trust. Thanks to the clinical geneticists for participating in the study, and to Professor Theresa Marteau for helpful comments on an early draft.
REFERENCES Antley RM (1979) The genetic counselor as facilitator of the counselee's decision process. Birth Defects 15(2): 137-168. Brunger F, Lippman A (1995) Resistance and adherence to the norms of genetic counselling. J Genet Couns 4:151-167. Elwy AR (in preparation) Health professionals' attitudes towards Down syndrome in the context of prenatal screening (PhD thesis). Ford S, Fallowfield L, Lewis S (1996) Doctor-patient interactions in oncology. Soc Sci Med 42:15111519. Fraser FC (1974) Genetic counseling. Am J Hum Genet 26:636-659. Kessler S (1997a) Genetic counseling is directive? Look again. Am J Hum Genet 61:466-467. Kessler S (1997b) Psychological aspects of genetic counseling: 9. Teaching and counselling. J Genet Couns 6:287-295. Kessler S (1997c) Psychological aspects of genetic counseling: 11. Nondirectiveness revisited. Am J Med Genet 72:164-171. Lippman-Hand A, Fraser FC (1979) Genetic counseling: Provision and reception of information. Am J Med Genet 3:113-127. Marteau TM, Johnston M (1990) Health professionals: A source of variance in health outcomes. Psychol Health 5:47-58. Marteau TM, Slack J, Kidd J, Shaw RW (1992) Presenting a routine screening test in antenatal care: Practice observed. Pub Health 106:13-41. Michie S, Allanson A, Armstrong D, Weinman J, Bobrow M, Marteau TM (1998) Objectives of genetic counselling: Differing views of purchasers, providers and users. J Pub Health Med 40:404-408. Michie S, Axworthy D, Weinman J, Marteau TM (1996) Genetic counselling: Predicting patient outcomes. Psychol Health 11:577-582. Michie S, Bron F, Bobrow M, Marteau TM (1997a) Non-directiveness in genetic counselling: An empirical study. Am J Hum Genet 60:40-47. Michie S, Marteau TM, Bobrow M (1997b) Genetic counselling: The psychological impact of meeting patients' expectations. J Med Genet 34:237-241.
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Michie S, McDonald V, Marteau TM (1997c) Genetic counselling: Information given, recall and satisfaction. Patient Educ Couns 32:101-106. Shiloh S, Avdor O, Goodman RM (1990) Satisfaction with genetic counseling: Dimensions and measurement. Am J Med Genet 37:522-529. Smith JA (1995) Semi-structured interviewing and qualitative analysis. In Smith JA, Harre R, Van Langenhove L (eds) Rethinking Methods in Psychology. London: Sage, pp 9-26. Smith JA (1996) Beyond the divide between cognition and discourse: Using interpretative phenomenological analysis in health psychology. Psychol Health 11:261-271. Smith JA, Michie S, Allanson A, Elwy R (in press) Certainty and uncertainty in genetic counselling: A qualitative case study. Psychol Health. Taylor KM (1988) "Telling bad news": Physicians and the disclosure of undesirable information. Social Health Illness 10:109-132. Turner S, Sloper P (1992) Paediatricians' practice in disclosure and followup of severe physical disability in young children. Dev Med Child Neural 34:348-358. Van Zuuren FJ (1997) The standard of neutrality during genetic counseling: An empirical investigation. Patient Educ Couns 32:69-79. Van Zuuren FJ, van Schie ECM, van Baaren NK (1997) Uncertainty in the information provided during genetic counseling. Patient Educ Couns 32:129-139. Wertz DC, Fletcher JC (1988) Attitudes of genetic counselors: A multinational survey. Am J Hum Genet 42:592-600.
Genetic Counseling: Clinical Geneticists' Views Susan Michie,1'3 Jonathan A. Smith,2 Jonty Heaversedge,1 and Simon Read1
Evaluation of genetic counseling requires a clear consensus about its objectives, which is not evident in published definitions and guidelines. This study aims to investigate clinical geneticists' beliefs and thoughts about their practice. Structured interviews with eight clinical geneticists addressed the aims, skills, and expectations of genetic counseling. Analysis of transcribed interviews revealed four key themes, with contradictory aspects: 1. Providing information that is objective, full, and accurate versus information that is contingent on circumstances and tailored to individual needs. 2. Eliciting emotion and dealing with it directly versus dampening down and containing emotion. 3. Communicating nondirectively versus directively. 4. Expecting to perform a range of sophisticated tasks while having minimal training in the necessary skills to achieve these. These results have implications for the nature of the professional role, the development of training required for it, and the evaluation of genetic counseling. KEY WORDS: Genetic counseling; nondirective counseling; doctor-patient communication; health professionals; attitudes.
INTRODUCTION To develop and maintain effective health care, the behavior of health professionals needs to be considered alongside that of patients. However, the behavior of health professionals is rarely considered systematically by psychologists (Marteau and Johnston, 1990). 1Guy's, King's, and St Thomas' Medical School (King's College, London). 2Psychology Department, University of Sheffield, Sheffield, United Kingdom. 3Correspondence should be directed to Susan Michie, Guy's, King's, and St Thomas' Medical School (KCL), Psychology and Genetics Research Group, Thomas Guy House, Guy's Campus, London SE1 9RT, United Kingdom; e-mail: [email protected]. 275 1059-7700/99/0800-0275$16.00/l © 1999 National Society of Genetic Counselors, Inc.
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We know something about the behavior of clinicians providing genetic counseling, with a documented pattern of extensive provision of technical information, little engagement in social or emotional issues, and a variety of advice and evaluative statements (Lippman-Hand and Eraser, 1979; Michie et al., 1997a; Smith et al., in press; Van Zuuren, 1997; Van Zuuren et al., 1997). In order to understand the behavior of genetic counselors and clinical geneticists, it is necessary to study how counselors view the methods and aims of their counseling. This is important in evaluating genetic counseling, since the effectiveness of the process can only be judged in terms of what it is trying to achieve. Attempts at evaluation have used textbook definitions of genetic counseling as the basis for establishing outcome measures (Michie et al., 1996). An alternative approach to ascertaining objectives is to ask those who provide the service. One study that has done this has compared the views of service providers, users, and purchasers (Michie et al., 1998). Using the questionnairebased Delphi technique, this study found that the five most frequently cited and highly ranked objectives were, in descending order, to (1) provide information, (2) give support, (3) facilitate decision making, (4) assess risk, and (5) achieve understanding. The present study sought to investigate, in more detail, clinicians' beliefs about the objectives of genetic counseling. Knowledge of the objectives of a service is essential for its evaluation. Knowledge of beliefs and thoughts about these objectives is important to understand current practice and to change future practice, if evaluation studies suggest that this is desirable. This study aims to investigate clinical geneticists' beliefs and thoughts about the aims and methods of their practice. METHOD Sample Twelve clinical geneticists and genetic counselors from two regional genetics centers were interviewed as part of a postgraduate student research project. When approached two years later, eight gave permission for their interviews to be analyzed for publication. They were all medically qualified clinical geneticists from a regional genetics center outside London. The Interview The structured interview attempted to elicit counselors' and clinicians' views on the aims of genetic counseling and to obtain accurate reports of their behaviors and cognitions during consultations. Three pilot interviews showed the difficulties of eliciting cognitions. Following consultation with cognitive psychologists, the interviews included both open-ended questions about aims, skills, and patient expectations and vignettes with minimal content that addressed particular aspects of
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the genetic counseling consultation: agenda setting, problem definition, information giving, decision making, disagreement, and emotional patients. The interviews lasted about 40 minutes. The Analysis The first four interviews were analyzed by the first author, using interpretative phenomenological analysis (IPA; Smith, 1995, 1996). The aim of this method is to explore the participant's view of the world and to adopt, as far as is possible, an "insider's perspective" of the topic being studied. At the same time, IPA recognizes that this process relies on the interpretive activity of the researcher. The transcripts were read a number of times, and anything of significance was noted in one margin. The next stage identified emerging themes or concepts. The other margin was used to note instances of these in the texts. A tabular document was then produced listing the themes and the illustrative text from all four interviews. The second author read the transcripts and the initial analysis, verified the validity of the analysis, and also identified a further theme. Some of the themes were observed to cluster together (e.g., patient-centered and nondirective communication), and others appeared to be higher-order (e.g., adjusting according to individual difference was seen as a subset of information giving). Four superordinate themes were produced, and other themes that seemed incidental or unconnected were dropped. The second four transcripts were read to establish whether the identified superordinate themes were supported, or disconfirmed by these data. The identified themes were supported, and no new themes were identified. A further document was drawn up providing instances of the themes from all eight interviews. The document and second batch of interviews were read by the second author, and a final organization of the themes was agreed by the first two authors. This final document then provided the basis for the narrative account written by the first two authors and presented in the following results section. RESULTS Our analysis of practitioners' accounts of the skills and tasks required in genetic counseling is organized in terms of four key themes which emerged, each of which can be described as having a contradictory aspect: 1. Providing information. Giving information that is objective, full, and accurate, on the one hand, and giving information that is contingent on circumstances and tailored to individual needs, on the other. 2. Dealing with emotion. Eliciting emotion and dealing with it directly, on the one hand, and dampening down and containing emotion, on the other.
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3. Communicating nondirectively versus directively. 4. Skills and training. The objective of performing a range of sophisticated tasks, on the one hand, and having minimal training in the necessary skills to achieve these, on the other. 1. Providing Information Views about giving information varied from an emphasis on providing information that is correct, balanced, accurate, expert, and "the truth" to an emphasis on contingency. For example, information was often uncertain, it could not be separated from patient expectations or its emotional consequences, and it needed to be tailored to individual abilities and needs. Some responses emphasized the importance of the presentation of full information, and there was an implication that this could be done in a fairly uniform, objective and straightforward manner: They [patients] want information in order to help them make decisions, and they want that information to be accurate and expert. (4, 81)4 So that they can make major life decisions resulting from correct, balanced information. (2, 90)
Indeed, some responses delimited the role of the clinical geneticist as information provider by explicitly ruling out other roles and therefore, implicitly, tasks, which were not part of the job description: I think that is where you have to be very clear what your remit is because you are not a psychologist, you are not a social worker, and just because certain of these services aren't available, I think one has to resist acting out other people's roles. But I think by and large people are coming for accurate information about whatever questions they have got and maybe, as I said earlier, discussion of options. (6, 137)
However, many responses suggested a realization that the presentation of information was not straightforward and was contingent on a number of factors. First, in contradiction to the notion that the task is to give full, objective, accurate information, there is also a recognition that much information is uncertain: That group of patients can be difficult because they are pushing you to your limits of your own understanding and knowledge and sometimes to the limits of what is known. (7, 123)
In the face of the difficulty of not being able to give information which is certain, learning how to give this information becomes a skill in itself: I keep on saying that one of the key things that you learn in genetics is how to say you don't know with confidence, because a lot of time you have to deal with people that you haven't got answers for, and very often you are not providing clear-cut information. (6, 65) 4
Material in square brackets is clarificatory information added by the authors. Numbers in parentheses at end of quotations are identifiers, e.g. (4, 81) means Interview 4, Line 81.
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The degree of uncertainty can create a dilemma for the clinician who has to decide how the uncertainty is to be transmitted to the patient: If a diagnosis is uncertain, some people will give relatively uncertain information. Particularly if you have a child with a dysmorphic problem, parents often want a diagnosis, and therefore an important thing is knowing whether it's good for them to be given a diagnosis and a label that might be incorrect. (2,136)
The uncertainty of the information clinical geneticists can give is then compounded by the fact that patients may be perceived as not knowing what they want to know: I don't always think that when they are referred they actually know what they can actually expect, and once they come through the door, there are still people who wonder exactly what is going to happen and what they actually want of it. I do think that is probably one of the greatest disappointments for them as well, that sometimes we just don't know. (1, 152)
Many of the responses point to a recognition that providing information is a communicative act which is influenced as much by the receiver as the sender. There is a suggestion that it is important to establish the prior knowledge of the patient: One of the main aims is to find out exactly what the patient or the family have already been told and what they understand and what their perceptions are already. (5, 23)
Some responses point explicitly to the need to tailor how and what information is provided to this existing baseline: What I need to do is to tease out their knowledge base and what level I need to give them this information at and try and deliver it in a fashion that is understandable to them and not over their heads, nor under their toes. (8, 162) Ask them what they understand and what knowledge they already have and see what their perception of the problem is, and then I just try as simply as possible to just try and explain the nature of the condition concerned, always checking to make sure that they understand what is going on and, if they look particularly vague, then trying to take it a step back and try and go through it more simply. (5,130)
Further, patients vary in the amount of information they actually want or require, and this may be another factor influencing delivery: I think one has to be sensitive to what they want to know really. I mean I don't believe in hiding anything because there isn't anything particularly to hide. But on the other hand, it's not a question of force-feeding the information that you have got. I think you just have to assess it there and then on the spot, how things are going, how they are taking it, and what they want to know. (3, 146)
Clinicians may also need to make assessments of how much information they believe the patient is able to take: There are very clear limits to what somebody can take in, and so there may be occasions where one feels, well, there is no point in giving a person a whole lot more detail; they have had more than they can cope with already. (4, 211)
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Thus, many responses suggest that providing information is not as straightforward a task as it may first appear. It is, in fact, contingent on a range of factors which can influence delivery and reception. Since giving information is a complicated process, it requires a range of psychological skills. These skills include establishing prior knowledge, assessing how much knowledge patients want, and determining their ability to take in new information and to cope with it. In practice, many of the clinicians' accounts themselves suggest an analytic approach to the simplistic definition of giving information: Well, I suppose one is concerned in giving information as accurate as possible but yet not in so detailed a form that it is not easily understandable. And that goes for risk figures, for instance. And then in terms of information about the disease, again one wants to give a full and accurate picture, but you don't want to be unnecessary alarmist, but equally you don't want to conceal information. (4, 233) In a first instance, you are an information service, but recognizing that information has got consequences to people, and therefore, if you are giving this information, you have to be aware of what impact it might have and then to, with the limitations of your experience and qualifications, help to see people through that information and what it might mean to them. (6, 57)
2. Dealing with Emotion A lot of genetics involves real distress and grief, and there is no doubt that [genetic] counselors must be skilled in coping with it themselves and also helping families cope with it. (7, 66)
While most respondents recognize the importance of emotional expression, their accounts appear to reflect quite different views on dealing with emotion: You sometimes get clues to other problems and issues—so whether or not a particular question is causing tension in the family, whether or not there is an element of guilt from a particular problem, and 1 don't think these should be ignored. (2, 318) This is always the thing that we are dreading and trying to avoid [patient being emotional and tearful]. I personally haven't experienced this sort of thing because of the nature of the condition that I deal with, I suppose. But I can imagine, you know, that would be awful. (3,238)
On the one hand, emotion is something that can provide useful indicators of other problems, and it must be dealt with; on the other hand, emotion is something which can be perceived as difficult to handle and which, it may be hoped, can be avoided. Even when it is recognized that emotional expression from the patient is important, there are still differences in the status accorded such expression. Some clinicians appear to advocate active elicitation: Sometimes those issues [reasons for coming] are genetic, sometimes they are not genetic, and it is just as important to find them out so that they can be dealt with. For example, the genetic issue might be being used as an excuse for causes of marital disharmony. (2, 125)
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Helping the patient to articulate emotional concerns seems an integral part of counseling, and an end in itself. Other accounts are rather different: There are other things interfering with the counseling process, be it high levels of anxiety or unresolved grief that you suddenly tap into, and there I find you're blocked basically. You have got to stop and deal with those issues and then when they're dealt with you can then get back to the counseling issues. (8, 192) I tend to provoke it [emotion] because I think it is important to get it out of the way. So if 1 sense that's there, then I certainly won't be skimming around it. I basically dive headlong into it, knowing that I might be buying quite a bit of trouble and take quite a bit of time. But if you are into effective counseling, I believe you have got to do it. (8, 255)
Here emotional issues seem to be viewed as getting in the way of counseling. Their elicitation is important, but in order to dispense with them prior to the counseling proper—presumably the imparting of genetic information and assistance with the process of rational consideration of options. Other interviewees suggest a less proactive stance toward emotional expression: It's sometimes difficult to say things in that you want to be sensitive; you don't want to necessarily rake up extra distress. (1, 324)
Thus, emotional expression may be important, but respondents differ considerably in their views on how far it is to be actively elicited and whether it is integral to, or lies outside, the counseling process.
3. Communicating Nondirectively Versus Directively The general ethos within genetic counseling supports nondirectiveness. However, in our participants' responses, there appeared to be a variety of views on this. First, the orthodox position, that counseling should be nondirective and can be achieved by not giving advice, is put forward by some: My role is not to make decisions for them. My role is to try to give them as much information as I can in order to help them to make appropriate decisions. I have my personal views, but I cannot force my views on individuals, and no matter how much they push me for that then, I won't advise them. (2,425) What 1 sometimes do is say something like "Yes, I think it would be very difficult being in your position and having to make up your mind about that." (7, 147)
However, other respondents express a very different position: I actually don't feel that that [nondirectiveness] is always the right way forward. So I wouldn't call myself a totally nondirective counselor. And I would also say that I think there are ways either to—if you feel that it would be a shame if they went one route or the other—then you can—may not influence their decision—but you may use things highlighting all the positive or negative aspects or the other way round. So I don't believe
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Thus while insisting that decision making must be for the patient, Respondent 1 suggests it is also possible, even desirable, for the clinician to communicate his or her point of view through the highlighting of particular aspects. Indeed, for some, directiveness can go even further: And then offering advice, if appropriate. (5, 28)
4. Skills and Training A great range of complex psychological tasks were seen as necessary for genetic counseling. We have already seen how the giving of information itself requires sophisticated skills, and this is also true of dealing with emotions and working out an appropriate stance in terms of being directive or nondirective. Two explicit tasks mentioned by clinicians were listening and responding appropriately to different individual people and situations. The "listening" is to both verbal and nonverbal, explicit and implicit messages and also extends to the difficult task of "hearing" what is not said: Probably the most important thing is learning how to listen and learning how to find out what are the real issues. (2, 120) You watch them, you know. You see who is sitting and who is tense and all these sorts of clues as to what is it they want of you at this point. (6, 189) 1 try to listen to what they are saying and also listen to what they are not saying, as much as I can. (8, 146) I would take the family details for a pedigree, and I would use that as a good opportunity, not just to get that information, but to judge, get an idea of what their attitude to the condition is and a lot of things, because it's fairly neutral information which you can be recording. It's a good opportunity to get an idea of some of the ways that they are feeling about things more generally, without having to ask directly about that. (4, 104)
Clinicians also speak of the importance of aiming to assess each individual's ability, level of understanding, and personal views and then tailoring one's behavior accordingly: How one approaches things is always very closely related to the type of person or couple or family one is seeing. So you have to take into account their intelligence, their level of education, their degree of understanding of the disorder, whether they are likely to be able to understand genetic risks, to what extent they have had personal experience of the disease, and to what extent that's colored their views—and basically what their overall attitude to the disorder and the situation is. (4, 131) There is a limit, isn't there, at any one time of how much anybody can take in and understand? One doesn't want to overload them. It varies so much from person to person. (3, 139)
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Despite the great range and complexity of the tasks that clinical geneticists expect to undertake, there appears to be little in the way of explicit techniques used or training for these tasks. The lack of training is seen as a problem in, for example, determining how to assess people psychologically or how to respond to emotion: I think it's very important to be able to pick up the other cues (that you realize that is not exactly what is perhaps the best) at that particular time. But I have had no particular training in that, and 1 know I am not particularly good at that, although it is important. (5, 60) Medics with no training in counseling—I think that [emotionality] is one of the most difficult things really. I would find that quite difficult because I don't think that I will know exactly the best things to say. I know which things 1 certainly won't say, having sat in with a few people where that has happened, but I'm not quite sure that I would do it particularly well really, and I think that is one of the things that I will find most difficult, 1 think, really, dealing with distress. (5, 265)
Respondents do recognize the notion of limits to expertise and the importance of getting support or advice when problems extend beyond these limits: It is very useful to have some support for this, what you perceive as an abnormal reaction, where 1 don't think we are qualified and maybe also have to be very careful how far we explore—because how far can we deliver support? I mean, I think if you're going to do something, you have to know how far you can go. (1, 112)
Of course, skills improve with experience and can be enhanced by postqualification training: I think to begin with you would be rather upset and embarrassed and wondering how to deal with the situation [patient being emotional and tearful], but one hopes that as the time goes on with our psychiatric sessions, we'll be able to learn to cope and think otherwise. (3,242)
DISCUSSION The themes identified in these interviews reflect four main tensions in the tasks and skills of genetic counseling: giving information that is full and accurate, on the one hand, and that is contingent on circumstances, on the other; eliciting emotion versus dampening down and containing emotion; communicating nondirectively versus directively; and a contradiction between aiming to achieve a range of sophisticated tasks and having minimal training to do this. These observations raise two main questions: What is the explanation for these contradictions and what are the implications for the development of genetic counseling? In a recent review, Kessler (1997b) contrasts two models of genetic counseling. The models have different aims: The teaching model aims to end up with an "educated" counselee, while the counseling model aims to leave the counselee psychologically more autonomous and functional. The teaching model is based on the notion that patients come to genetic counseling primarily to obtain information.
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Emotional responses tend to be seen as an interference with the learning process, and so the clinician is likely to avoid or suppress emotional topics and refrain from asking emotionally evocative questions. The counseling task is to provide information as impartially and with as much balance as possible and to correct misinformation. This requires planning how to present comprehensive, clear, and understandable information to the individual and a knowledge of pedagogical skills. The counseling model is based on the notion that counselees come for counseling for complex reasons and the tasks are multiple: to understand the counselees, to bolster their inner sense of competence, to promote a greater sense of control over their lives, to relieve psychological distress, to support and possibly raise their self-esteem, and to help them find solutions to specific problems. This requires a large number of complex skills, for example, the assessment of individual emotional, cognitive, social, and cultural differences; adapting one's communication style in response to this assessment; the ability to monitor the impact of one's communication; and techniques of developing self-efficacy, decision-making, and problem-solving skills and emotional regulation. These two models can to some degree be seen to mirror the tensions we have presented. Thus, presenting full objective information and resistance to emotional expression are consonant with the teaching model of genetic counseling; the tailoring of information to individual needs and circumstances and the eliciting of emotion seem to echo the counseling model. Thus, within their accounts, these clinical geneticists would seem to be influenced by competing models of practice. The contradiction between the push to provide the "full range of facts" at all times and the push to tailor the information to different individuals according to their perceived needs has been documented and discussed previously in genetic counseling (Brunger and Lippman, 1995; Michie et a/., 1997c). If one of the main purposes of giving information is to enable informed decision making, it is necessary for that information to be recalled. One study of genetic counseling found that the medical and technical information that was provided in genetic consultations was recalled less well than the implications of that information for the family (Michie et al., 1997c). This suggests that giving personally tailored information may be a more successful strategy than attempting to provide the full range of potentially relevant information. Some studies have also reported contradictions between what health professionals do and what they say they do, with regard to the provision of information. Differences between observed and self-reported behavior have been found in a systematic literature review of the last 10 years of health professionals giving diagnoses (Elwy, in preparation) and in obstetricians presenting prenatal screening tests (Marteau et al., 1992). Observed practice has been found to differ from selfreport in being more routine, with set phrases (Taylor, 1988), less encouraging of patient question asking (Ford et al., 1996), and stressing individuality less (Turner and Sloper, 1992). In other words, health professionals perceive their behavior to
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vary according to individual patients, while observational studies show that this does not happen in practice. The content of information provided in counseling has been found to be the most important determinant of patient satisfaction (Shiloh et al., 1990). This may reflect a variation in practice along the dimension of "full and accurate" versus "contingent on circumstances." Nondirectiveness is generally considered an important component of genetic counseling (Kessler, 1997c). In a multinational survey of medical genetics, 92-94% of 677 respondents regarded nondirective approaches as appropriate (Wertz and Fletcher, 1988). However, a difference between self-report and practice has been observed in genetic counseling (Michie et al., 1997a). While the majority of genetic counselors rated themselves toward the nondirective end of a rating scale, there was no association between self-reported directiveness and the number of directive statements used. The authors of this study surmised that one of the reasons for advocating nondirectiveness may be a way of dealing with the uncertainties and contradictions of the objectives of genetic counseling. However, this approach poses problems in practice both for geneticists, as illustrated in the current study, and for patients. A study of patient expectations of genetic counseling found that 50% came to the consultation hoping for advice (Michie et al., 1997b). When these expectations were met, patients experienced less concern than when they were not met. Our accounts also point to the difficulty of defining nondirectiveness. One solution to this problem has been to narrow the definition of directiveness to prescription (Antley, 1979) or coercion (Kessler, 1997a) and then maintain correctly that genetic counselors are not directive (Kessler, 1997a). However, this avoids the issue of social influence: Counselors are likely to influence patients, and patients may want to be influenced. For example, one study has found that 50% of patients come to genetic counseling expecting advice, and when expectations for advice and reassurance were met, patients were less concerned and their anxiety level was more reduced than when such expectations were not met (Michie et al., 1997b). A better way forward would seem to be to acknowledge and raise this explicitly within the consultation. Increased awareness of processes is a first step to increased control over them. This would increase patient autonomy more than unsuccessful efforts to achieve nondirectiveness or an uncomfortable knowledge that one's behavior was not consistent with one's professional ethos. What are the implications of our study? There is converging evidence pointing to problems in the definition of genetic counseling. Thus definitions may contain a range of aims and tasks, only some of which are prioritized in practice. This study also points to tensions contained within clinical geneticists' accounts of the aims of practice. More research needs to be conducted on defining genetic counseling. Without clarity about the desired aims and methods of a service, its evaluation is not possible. One way of developing this clarity would be to bring together counselors and clinicians with a range of views and conduct focus groups providing instances
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of contradiction and ambiguity in definition as stimulus for discussion. Groups would be charged with attempting to ascertain whether consensual definitions of genetic counseling were possible and, if not, with suggesting how to deal with this situation. These results also point to the importance of more training in genetic counseling. The apparent contradictions in accounts of practice, in part, point to the difficulty of the tasks involved. Providing information is recognized as a psychologically complex activity, and emotional expression is recognized as an important part of patient behavior. Knowing how to impart information and how to deal with emotional expression is an important skill that require specialist training. ACKNOWLEDGMENTS This study is part of a program of research funded by the Wellcome Trust. Susan Michie is supported by the Wellcome Trust. Thanks to the clinical geneticists for participating in the study, and to Professor Theresa Marteau for helpful comments on an early draft.
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