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Egenis · Events

Egenis seminar with Dr Susan Kelly

Seminar   09.12.2008

Starts

30.11.1999

Ends

30.11.1999

Speakers

Dr Susan Kelly, Egenis Senior Research Fellow

Organised by

Egenis

Venue

University of Exeter,Egenis, Byrne House,St Germans Road,Exeter, EX4 4PJ

Room no: GF7, Byrne House

Event details

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.

Further details

http://www.genomicsnetwork.ac.uk/egenis/events/pastevents/seminars/furtherdetails,3281,en.t4.html