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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.

Original publication

DOI

10.1177/0963662517747200

Type

Journal article

Journal

Public understanding of science (Bristol, England)

Publication Date

04/2018

Volume

27

Pages

352 - 364

Addresses

Brighton and Sussex Medical School, UK; King's College London, UK.

Keywords

Humans, Information Dissemination, Genomics, Evidence-Based Medicine, England, United Kingdom, Community Participation