MICHIE, S

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UCL Discovery

Genetic counsellingSIRThe question of what counts as success in genetic counselling is discussed byChadwick (1) and Clarke (2). They agree that measuring the effectiveness of geneticcounselling by number of termination of pregnancies is inappropriate.Clarke suggests an alternative outcome measure of workload, but Chadwick regardsthis as inadequate. She also considers the 'right to choose' (or autonomy) to be aninadequate outcome measure. Autonomy is a process rather than an outcome. It is ameans to an end. But what end?She says that one cannot avoid the question of 'what is the objective of geneticcounselling'? It is, she suggests, to give options that may improve the genetic healthof individuals, thereby improving the genetic health of the population. This is noteugenics, in that the population result is a by-product of giving choice, albeit arestricted choice, to individuals, rather than a government policy. In order to avoidany possibility of hidden coercion, Chadwick suggests that the objective of genetichealth be explicitly stated.Giving choice is not a neutral activity. It involves giving information, and givinginformation is of necessity selective. What information is given, and how it ispresented, is influenced by certain factors, for example, counsellors' beliefs about theobjectives of counselling and how to achieve 'non-directiveness'.So talk of autonomy or workload does not answer the question of what geneticcounselling is aiming to achieve, or what counts as success. These questions needto be answered if patients are to be better informed about the service they are beingprovided with, as advocated by Chadwick.Clarke tries to deal with the problem by broadening the remit of genetic counsellingbeyond information relevant to reproductive choice to diagnosis and support for thosewith genetic disease, and by broadening the measure of effectiveness beyondworkload to include patient and referrer satisfaction. Both are steps in the rightdirection, but they are not sufficient. First, I will deal with the process of counselling;second, with the outcome, and third with the input.Effective counselling requires effective communication: giving information that isrelevant to patients' concerns in a way that is easily understood. We know somethingabout what issues genetic counsellors address, but less about whether these are theissues of most concern to patients (3). We have little information about the extent towhich patients' views are elicited or the extent to which counselling style is 'non-directive'.In terms of outcome, we know something about what patients recall of what theyhave been told, but less about what they understand and value of what they havebeen told (4). We know little about the extent to which counsellors have accuratelyjudged patient concerns or met their needs.Neither patient nor counsellor comes to the consultation as a blank sheet. Eachbrings their experience, expectations and beliefs. These will shape the process of theconsultation and may be important in understanding the outcome and how it isachieved.In conclusion, there appears to be a lack of clarity about what counts as success inprinciple. Despite this, we can make progress in answering the question of whatcounts as success in practice. The empirical study of the processes of counselling,and how they relate to a variety of outcome measures, can inform us as to what theactive ingredients of counselling are. Once this is known, the discussion of which ofthe active ingredients count as effective will be easier. Any discussion ofeffectiveness, evaluation or success inevitably raises the question of objectives,which include value systems. The discussion between Chadwick and Clarke is usefulin helping to make this explicit amongst health professionals, as a first step toenabling it to be made explicit to patients. The debate about 'what counts as successin genetic counselling?' would be strengthened by:* more evidence about the input to, the processes and outcomes of counselling, andthe relationships between them, and* the inclusion of purchasers and users of the service.References(1) Chadwick R F. What counts as success in genetic counselling? Journal ofMedical Ethics 1993; 19: 43-46.(2) Clarke A. Response to: What counts as success in genetic counselling? Journalof Medical Ethics 1993; 19: 47-49.(3) Sorenson J, Swazey J, Scotch N. Reproductive pasts, reproductive futures:genetic counselling and its effectiveness. Birth defects [original article series] 1981;17: 4. New York: Alan R Liss, 1981.(4) Tuckett D A, Boulton M, Olson C. A new approach to the measurement ofpatients' understanding of what they are told in medical consultations. Journal ofHealth and Social Behaviour 1985; 26: 27-38.SUSAN MICHIE Dphil, CPsycholResearch Fellow in Health PsychologyGuy's and St Thomas's Medical and Dental School,Ground Floor,Old Medical School Building,Guy's Campus,London SE 9RT

GENETIC-COUNSELING

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