SpeakersDr Susan Kelly, Egenis Senior Research Fellow
University of Exeter,Egenis, Byrne House,St Germans Road,Exeter, EX4 4PJ
Room no: GF7, Byrne House
Time: 3:30 - 5:00 PM
Title: The concept of the gene in parents' experiences of children’s genetic syndromes
Parents of a child undergoing evaluation and potential diagnosis of a genetic syndrome encounter specific language about the role of genes in the production of particular phenotypes. However, in the course of raising and caring for a child with a genetic condition or impairment parents encounter, and make decisions in the context of, what I term ‘discourses of intervention’ – that is, a view of childhood impairment as an interruption of potential, and of bodies and impairment as malleable and interveneable. In this talk I explore potential tensions between gene concepts and interveneability in a series of narrative interviews conducted with parents of children diagnosed with genetic syndromes, and from exploration of language used on a prominent internet site in which genetic syndromes are presented for public and professional consumption/information (i.e., Genetics Home Reference, maintained by the National Library of Medicine, National Institutes of Health, USA). Additionally I draw from my previous work on phenomenological approaches to impairment, also from these data. I argue that parents often express an interest in and understanding of genes and genetic causes in terms of predictability, and explore meanings of predictability in these contexts.