Public engagement with genomics

Author:

Middleton AnnaORCID,Adams Avery,Aidid Hugbaad,Atutornu Jerome,Boraschi Daniela,Borra Julian,Bircan Tuba,Burch Claudette,Costa AlessiaORCID,Dickinson Anna,Enticknap Ann,Galloway Catherine,Gale Francesca,Garlick Emma,Haydon EmORCID,Henriques SashaORCID,Mitchell Marion,Milne RichardORCID,Monaghan Jack,Morley Katherine IORCID,Muella Santos Milena,Olivares Boldu LauraORCID,Olumogba FifiORCID,Orviss Kate,Parry Vivienne,Patch Christine,Robarts Lauren,Shingles Sam,Smidt Cindy,Tomlin Ben,Parkinson SarahORCID

Abstract

As detailed in its flagship report, Genome UK, the UK government recognises the vital role that broad public engagement across whole populations plays in the field of genomics. However, there is limited evidence about how to do this at scale. Most public audiences do not feel actively connected to science, are often unsure of the relevance to their lives and rarely talk to their family and friends about it; we term this dis-connection a ‘disengaged public audience’. We use a narrative review to explore: (i) UK attitudes towards genetics and genomics and what may influence reluctance to engage with these topics; (ii) innovative public engagement approaches that have been used to bring diverse public audiences into conversations about the technology. Whilst we have found some novel engagement methods that have used participatory arts, film, social media and deliberative methods, there is no clear agreement on best practice. We did not find a consistently used, evidence-based strategy for delivering public engagement about genomics across diverse and broad populations, nor a specific method that is known to encourage engagement from groups that have historically felt (in terms of perception) and been (in reality) excluded from genomic research. We argue there is a need for well-defined, tailor-made engagement strategies that clearly articulate the audience, the purpose and the proposed impact of the engagement intervention. This needs to be coupled with robust evaluation frameworks to build the evidence-base for population-level engagement strategies.

Funder

Kavli Foundation

Wellcome

Publisher

F1000 Research Ltd

Subject

General Biochemistry, Genetics and Molecular Biology,Medicine (miscellaneous)

Reference89 articles.

1. Genome UK: the future of healthcare.,2020

2. About Us.,2022

3. 100,000 Genomes Project

4. NHS Genomic Medicine Service.

5. Stakeholder engagement in policy development: challenges and opportunities for human genomics.;A Lemke;Genet Med.,2015

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