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Array comparative genomic hybridisation and the newborn intensive care unit: Sociological perspectives on mainstreaming medical genetics

Burke, Katherine Bernadette 2018. Array comparative genomic hybridisation and the newborn intensive care unit: Sociological perspectives on mainstreaming medical genetics. PhD Thesis, Cardiff University.
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Abstract

This thesis presents the findings of a UK-based ethnography of the mainstreaming of array comparative genomic hybridisation in the neonatal intensive care unit. Mainstreaming refers to the strategies employed to embed genetic/genomic technologies for patient benefit, incorporating genome-wide methods in everyday, mundane clinical work, beyond the specialist genetic realm. It draws on observations in the laboratory and the clinic alongside interviews with members of the extended bioclinical collective (Bourett, 2005). This constructs an ethnography of the activity of doing chromosomal microarray (Mol, 2002). I describe how three important traditions in sociological thought – namely (medical) uncertainty, processes of classification and categorisation and expertise – can be applied to the activity of mainstreaming. In the laboratory, I explore the role of standardisation and how despite calls for rigid adherence to technical rules, it is the subversion of standards – through appeals to expertise – that renders the technology workable for the messy clinical context. I continue by describing the dividing practices of the clinic, which designate infants as (potentially) genetically problematic, demonstrating how discourses between professionals and with parents serve to seek the assent of parents for chromosomal microarray testing through a highly directive process. I show how rhetorical discourse devices are using in ‘consent conversations’ as a tool in information sharing and as a means of persuasion. For the parents of infants having aCGH testing, uncertainty around decisions to test and the information genetic testing can generate are woven into personal narratives of restitution, chaos and quest (Frank,1995). I conclude by reflecting upon how the ability and means by which uncertainty is tolerated differs vastly between the laboratory, the clinic and the family and the way in which diverging practices enact ontology in medicine as bound to specific sites and situations (Mol, 2002).

Item Type: Thesis (PhD)
Date Type: Completion
Status: Unpublished
Schools: Medicine
Funders: Wellcome Trust
Date of First Compliant Deposit: 29 August 2019
Last Modified: 29 Aug 2019 14:10
URI: http://orca-mwe.cf.ac.uk/id/eprint/125177

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