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Title: Genetics and kinship : finding morality at their intersection
Author: Cowley, Lorraine Liddell
ISNI:       0000 0004 2745 6411
Awarding Body: University of Newcastle Upon Tyne
Current Institution: University of Newcastle upon Tyne
Date of Award: 2012
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This Cancer Research UK funded qualitative research was inspired by my genetic counselling experience and my interest in families with a cancer predisposition gene causing Lynch Syndrome (LS). The aim of the research has been to explore meanings and senses of family generated at the intersections of genetics and kinship. My thesis is focused on a family known to a Regional Genetics Service, who contributed to research (Kolodner, Hall et al. 1995) characterising one of the genes (hMLH1) causing LS. This genetic research made testing for LS possible. It framed individuals from the biologically constructed family as the first to know their genetic risk status for this condition. My study emerged out of an interest in what this involvement in genetic research and knowledge production might have had on participants' sense of individual and kinship identity. In- depth multiple narrative interviews using visual props such as, family photographs, their genetic family tree and social maps were conducted with fifteen of fifty members of the family who had been offered testing, (some of whom had the genetic mutation, while the majority did not). Respondents were invited to discuss their family relationships and their engagement with genetic testing. Findings show how participants discursively managed both biomedical notions of family as given and contemporary notions of family as chosen, when drawing their complex boundaries of family. Three chapters within the thesis discuss the data. In the first, narratives of respondents' history with biomedical engagement show meanings of family that were generated in this context. The second explores family as chosen and discusses respondents' senses of obligation, responsibility and claims for social value in limiting or expanding capacity to be close with family. The third chapter explores how senses of morality were framed and intensely highlighted in participants' narratives about those who declined a genetic test. It is at the intersection of choice and responsibility that a moral lens appeared through which participants viewed those who declined testing and it is within this emotive setting that kinship ties had and have the potential to be disrupted and family dynamics disturbed.
Supervisor: Not available Sponsor: Not available
Qualification Name: Thesis (Ph.D.) Qualification Level: Doctoral
EThOS ID:  DOI: Not available