Professional and parental responsibility in the management of risk in children affected by a genetic disorder

Abstract

This paper examines interactions between healthcare professionals and clients as two social groups, each with their own ‘cultures’. The context is genetic counselling consultations between professionals and parents of infants diagnosed with a mild hereditary disorder G6PD deficiency (commonly known as favism) that are provided by telephone (telegenetic counselling). The condition can be managed by taking simple preventative measures, such as avoiding certain foods, medication and household products. The specific focus of the paper is on professional vs. lay (parental) responsibility in the management of risk in children affected by G6PD deficiency. Professional responsibility if typically attributed to the ‘world of medicine’ and ensuring patients’ well-being; whereas lay/parental responsibility concerns patients’ ‘lifeworld’ and ensuring a child’s wellbeing as a parent. Using activity analysis (Sarangi, 2010, 2011), we examine 50 audio-recorded telephone consultations to demonstrate that in the analysed context professional and parental responsibilities are not separate or distinct but closely intertwined. We show that ‘responsibility’ generally is constitutive of ‘knowledge’ and ‘agency’: a responsible action is based on the knowledge of relevant information about the preventative measures and active implementation of those measures. In the consultations, parents’ ‘knowledge’ and parents’ ‘agency’ are crucial for how parental responsibility is framed by professionals: it ranges from disseminating knowledge about preventative measures to family members and carers to active implementation of the preventative measures by parents. Parental responsibility talk maybe initiated by parents themselves who evoke various psychological and sociomoral concerns, such as their ability to care for an affected child; or being the cause of a child’s genetic condition. In addressing parents’ self-initiated responsibility, professionals foreground their own professional responsibility (that is that they are also responsible for taking care of the child); or reassure the parents about their knowledge and ability to manage their child’s condition.