Abstract
The United Kingdom’s 100,000 Genomes Project has the aim of sequencing 100,000 genomes from National Health Service patients such that whole genome sequencing becomes routine clinical practice. It also has a research-focused goal to provide data for scientific discovery. Genomics England is the limited company established by the Department of Health to deliver the project. As an innovative scientific/clinical venture, it is interesting to consider how Genomics England positions itself in relation to public engagement activities. We set out to explore how individuals working at, or associated with, Genomics England enacted public engagement in practice. Our findings show that individuals offered a narrative in which public engagement performed more than one function. On one side, public engagement was seen as ‘good practice’. On the other, public engagement was presented as core to the project’s success – needed to encourage involvement and ultimately recruitment. We discuss the implications of this in this article.
Highlights
In 2009, and as part of the long political push to implement genomics into healthcare, the UK House of Lords Science and Technology Committee called for the development of a ‘strategicGenomics England is the limited company wholly owned by the Department of Health tasked with carrying out the rare disease and cancer arm of the 100,000 Genomes Project
Genomics England representatives expressed a genuine desire to listen to the public and patients, to pay attention to their views and to concomitantly alter their approach in light of these views (‘all our decisions were influenced by feedback we got from the research that was done’ (Interviewee 17))
Our interviewees provided a range of examples in which the clinical need to demonstrate movement towards the publicly stated goal of mapping 100,000 genomes meant the need to actively generate public support overshadowed much of the public engagement agenda
Summary
The company states four central aims: to bring benefit to patients, to create an ethical and transparent programme based on consent, to enable new scientific discovery and medical insights and to kick-start the development of a UK genomics industry.. While the project was born out of a desire to bring patient benefit, to improve NHS infrastructure and to drive research in the genetics arena, as with many biotechnologies, it was ‘justified in terms of [its] potential to generate economic value’ and as such exemplifies the ‘bioeconomy’ at play (Petersen and Krisjansen, 2015: 30). Economic opportunities are anticipated from services required for DNA sequencing, data analysis and clinical interpretation. The 100,000 Genomes Project is much more than a DNA sequencing project, and clearly embedded within the NHS, its impact and influence stretch far beyond, and many different stakeholders will be involved in its activities
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