The UK’s 100,000 Genomes Project: manifesting policymakers’ expectations

Samuel, Gabrielle and Farsides, Bobbie (2017) The UK’s 100,000 Genomes Project: manifesting policymakers’ expectations. New Genetics and Society. pp. 1-18. ISSN 1463-6778 (Accepted)

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Abstract

The UK’s 100,000 Genomes Project has the aim of sequencing 100,000 genomes from UK National Health Service (NHS) patients while concomitantly transforming clinical care such that whole genome sequencing becomes routine clinical practice in the UK. Policymakers claim that the project will revolutionize NHS care. We wished to explore the 100,000 Genomes Project, and in particular, the extent to which policymaker claims have helped or hindered the work of those associated with Genomics England – the company established by the Department of Health to deliver the project. We interviewed 20 individuals linked to, or working for Genomics England. Interviewees had double-edged views about the context within which they were working. On the one hand, policymakers’ expectations attached to the venture were considered vacuous “genohype”; on the other hand, they were considered the impetus needed for those trying to advance genomic research into clinical practice. Findings should be considered for future genomes projects.

Item Type: Article
Keywords: Genomics; genome sequencing; genetics; expectations; genohype; bioethics
Schools and Departments: Brighton and Sussex Medical School > Clinical and Experimental Medicine
Subjects: R Medicine > R Medicine (General)
Related URLs:
Depositing User: Jessica Stockdale
Date Deposited: 29 Sep 2017 14:09
Last Modified: 29 Sep 2017 14:10
URI: http://sro.sussex.ac.uk/id/eprint/70378

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