The moral and sentimental work of the clinic: the case of genetic syndromes

contribution to the project. Abstract This paper reports on the genetics clinic and examines the wider functions it provides for parents who have a child with learning disabilities that may be associated with an underlying genetic cause. It derives from an ethnographic study of one clinical genetics team within a UK clinical genetics service and their clinical caseload, specifically their cases of genetic syndromes associated with dysmorphology, a speciality within clinical genetics. Dysmorphology is the medical study of abnormal forms in the human and is concerned with the identification and classification of a variety of congenital malformations. Our analysis of the clinical consultations and subsequent interviews with parents indicate that obtaining a genetic diagnosis and classification of their child's problems was not the sole function of these consultations. In addition, the clinic provides parents with moral absolution from having 'caused' their child's problems and is an important site for the sentimental and celebratory focus on the child. Thus, the role of the clinical genetics service is not merely to assemble a diagnosis from the available information and to provide a source of expert opinion on the causes of the condition, but to provide reassurance to parents who might otherwise blame themselves (or be blamed by others) for their child's condition. An important aspect of these consultations was the sentimental work of repairing the child, providing a sphere in which the development and behaviour of the child is discussed in favourable terms, and given assurances of 'normal' parenting and family life, often in marked contrast to their experience in the wider public world. Thus, the work of establishing diagnostic categories also allows important moral and sentimental work to be accomplished within the clinic. Introduction The development of genetic technologies in the field of medicine has given rise to a substantial body of research that has examined the resultant clinical services, in particular the work of genetic counselling. The scope of this paper does not permit a comprehensive review of this work (for overviews of the areas of interest have understandably included the process outcomes of counselling: recall of information, patient satisfaction, predictive testing decisions and reproductive