title: Voicing the lifeworld: Parental accounts of responsibility in genetic consultations for polycystic kidney disease.
abstract: When parents, who are carriers of or are affected by a genetic disorder, make decisions about the health risks faced by their children, there may be multiple factors to consider. These may include the medical benefits, the parents' own experiences of learning about their genetic status, and the future autonomy of the child. Health professionals face the challenge of explaining the possible burdens as well as benefits of testing children, while promoting open communication within families about the risk of an inherited condition. While genetic consultations do not in themselves constitute decision making, parents nevertheless account for their actions and decisions in an attempt to display parental responsibility. In this paper we explore the accounting practices of parents in genetic consultations, focusing on how they articulate their responsibility with regard to testing their at-risk children for autosomal dominant polycystic kidney disease (PKD) and the communication issues surrounding the testing process and the disclosing of test results. Based on eight audio-recorded and transcribed genetic consultations from the UK, and drawing upon rhetorical discourse analysis, our findings suggest that (i) parents tend to foreground their practical 'lifeworld' considerations to justify their decisional actions; and (ii) there is considerable variation in the ways in which parents respond to information and advice offered by the professionals. The affected parent often presents their lifeworld concerns as outweighing, at least for the present moment, the longer term health benefits that might accrue to their children.
authors.affiliation: Institute of Medical Genetics, School of Medicine, Cardiff University, Cardiff, Wales, UK. clarkeaj@cardiff.ac.uk
authors.forename: Angus
authors.initials: A
authors.lastname: Clarke
authors.forename: Srikant
authors.initials: S
authors.lastname: Sarangi
authors.forename: Kate
authors.initials: K
authors.lastname: Verrier-Jones
mesh_terms: D000293:Adolescent; D002675:Child, Preschool; D003657:Decision Making; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006801:Humans; D007223:Infant; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D007690:Polycystic Kidney Diseases / Q000235:genetics*; D055815:Young Adult