title: Living without labels: the interactional management of diagnostic uncertainty in the genetic counselling clinic.
abstract: In the genetic counselling setting it is not uncommon for a client and genetic counsellor to be faced with uncertainty surrounding the exact diagnostic label to be assigned to the client's symptoms. The huge range of possible conditions/syndromes and the lack of definitive evidence available often combine to create diagnostic uncertainty or non-diagnosis (the assessment given where a genetic diagnosis of the client's symptoms cannot be confirmed at that point). This paper aims to explore the interactional management and negotiation of diagnostic uncertainty in the genetic counselling clinic in the UK. Through the application of discourse analytic tools (including reported speech, contrast and hedging) to transcripts of actual clinical interactions, the participants' use of evidence, and professional and client expertise, are examined and found to be key in the negotiation of diagnostic uncertainty. The complete data set for this research consists of transcripts of 18 clinical encounters between genetic counsellor and client. Two client cases are identified and analysed in detail in order to follow the pattern of interactional management of diagnostic uncertainty throughout the whole interaction. The findings suggest that, unlike other medical settings, clients within genetic counselling are able to actively participate in talk about diagnosis allowing, for the extent of non-diagnosis to be negotiated. This is particularly so during two moments in the interaction: the beginning of the clinic where the agenda is set, and towards the end of the clinic when a form of diagnostic assessment must be made. By providing an insight into the problematic interactional activity of giving a non-diagnosis this paper can contribute to discussions on genetic counselling practice. The analysis in this paper demonstrates how a genetic counsellor can manage the balance between accurate information-giving and empathy towards individual client needs for a diagnosis.
authors.affiliation: Cardiff University, Department of General Practice, Centre for Health Sciences Research, Neuadd Meirionydd, Health Park, Cardiff CF14 4YN, UK. Brookes-HowellLC@cardiff.ac.uk <Brookes-HowellLC@cardiff.ac.uk>
authors.forename: Lucy Claire
authors.initials: LC
authors.lastname: Brookes-Howell
mesh_terms: D003142:Communication; D003657:Decision Making; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease / Q000523:psychology; D005820:Genetic Testing / Q000523:psychology; D006801:Humans; D010353:Patient Education as Topic / Q000379:methods*; D010358:Patient Participation; D011369:Professional-Patient Relations; D035501:Uncertainty; D006113:United Kingdom