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.
Highlights
The United Kingdom’s (UK) 100,000 Genomes Project aims to sequence 100,000 genomes from UK National Health Service (NHS) patients who have a rare disease, an infectious disease, or cancer by 2017
Their dialogues resonated with previous literature which we discussed earlier, that highlights the pitfalls of unfulfilled promissory “genohype” often associated with genetic/genomic innovation (Brown and Michael 2003; Borup et al 2006; Petersen and Krisjansen 2015)
This paper has explored how policymakers’ expectations manifested within the UK’s recent and ongoing 100,000 Genomes Project
Summary
The United Kingdom’s (UK) 100,000 Genomes Project aims to sequence 100,000 genomes from UK National Health Service (NHS) patients who have a rare disease, an infectious disease, or cancer by 2017. Org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Such hyped descriptions of genetic/genomic innovations are not new. Scholars report a general “genetic optimism frame” within media and political representations of such technologies, which is commonly referred to as “genohpye” (Nelkin 1995; Petersen 2001; Nerlich, Dingwall, and Clarke 2002) Such hype has been shown to over-emphasize the benefits of genetics/genomics through “breakthrough narratives,” and underrepresent the risks (Nerlich, Dingwall, and Clarke 2002; Bubela and Caulfield 2004; Henderson and Kitzinger 2007). The performative effects of previous genohype could, be argued to have played a role in the launch of the UK’s 100,000 Genomes Project
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