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UK users’ and genetics clinicians’ experiences of direct-to-consumer genetic testing

Finlay, Teresa 2015. UK users’ and genetics clinicians’ experiences of direct-to-consumer genetic testing. PhD Thesis, Cardiff University.
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Abstract

In the last decade personal genomics has been available to the public by direct-to-consumer marketing and sales. Different tests are available including single nucleotide polymorphism (SNP) genotyping. SNP genotyping measures variation in nucleotides at specific points in deoxyribose nucleic acid (DNA) and can be analysed for information about ancestry, physical traits, risk of susceptibility to common complex diseases, genetic disorder carrier status and drug metabolism. SNPs have been analysed in human populations to associate variation with particular traits and common complex diseases, though the association data for disease risk is known to be unreliable. Some claim that direct-to-consumer genetic testing embodies a positive shift from medical hegemony to a market-oriented system while others are apprehensive about the lack of involvement of medical professionals and purchasers’ lack of understanding of probabilistic genetic information. These different views represent the dispute over SNP genotyping sold directly to the public that this study focuses on. My thesis explores this emerging technology using the Social Construction of Technology to investigate the experiences of a group of early adopters of the technology in the UK. I contrast their experiences with those of a group of UK genetic clinicians and examine participants’ respective understandings of SNP genotyping and its possible implications for the NHS. Whilst the data largely mirror the extant literature, they give an insight into the importance of social factors in influencing decision-making in relation to adopting or rejecting new technology. I discuss the data’s common themes of knowledge of genomics, the importance of social networks in understanding and engaging with new technologies, and personal versus collective medicine that characterise both groups’ experiences. To conclude I explore these themes in relation to the concept of biosociality.

Item Type: Thesis (PhD)
Status: Unpublished
Schools: Social Sciences (Includes Criminology and Education)
Subjects: H Social Sciences > H Social Sciences (General)
Funders: Economic and Social Research Council
Date of First Compliant Deposit: 30 March 2016
Last Modified: 15 Oct 2016 04:40
URI: http://orca-mwe.cf.ac.uk/id/eprint/85966

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