We know from the important survey conducted by Professor Anna Middleton, “Your DNA, Your Say”, that this is not a challenge faced by the UK alone. That survey, which covers more than 20 jurisdictions, identified common trends globally. And whilst the UK may be focussed on how to bring the benefit of genome sequencing to our own diverse population, we know that we are not reaching everyone. If people are mistrustful this means, at best, that they will be reluctant to engage and, at worst, that they actively refuse to be involved. This will, in turn, drive less diversity in the data that can be harnessed which will further exacerbate health inequalities between different ethnic communities as not everyone will be able to access the benefits of genome sequencing equally. If we are to truly bring the benefit of genome sequencing to the world then we need to be able to speak the right language about what those benefits are.
Watch the the full presentation from Public Policy Projects's YouTube channel here:
Middleton A, Parry V (2021). Socialising the Genome: Genomics, Communications and Public Trust. Invited speakers by the Public Policy Projects G20 Webinar event. 15 June. Online