National government

(When) should we allow genome editing?

UK citizens' jury on genome editing
Institution:
Partners:
Wellcome Genome Campus and Genetic Alliance
Duration:
12 months

Involve is partnering with the Society and Ethics Research Group, Connecting Science at the Wellcome Genome Campus, and Genetic Alliance to run a Citizens’ Jury on genome editing in the UK. This jury is part of the broader process to run a Global Citizens’ Assembly on the same topic.

Genome editing is a relatively new technique which gives scientists the ability to make highly targeted changes to DNA in plants, animals and humans. It has the potential to be inherited by future generations of the organism which was initially genome edited. The technology holds out the promise of a cure for particularly debilitating diseases, of improved harvests and animal welfare, but it also raises the possibility of designer babies and will have impacts on farming practices and animal husbandry. As a result, it raises profound questions about how the technology should be applied, how it might contribute to shared visions of the future, and critically who should decide when it should be used, and when not. 

The UK is one of the world's leading scientific centres. As a result involving the UK public in answering these questions could have an important impact on the regulatory environment here in the UK. However, as events in 2018 showed, when the Chinese scientist Dr He Jiankui used the technique to give a pair of twin girls immunity against HIV, to near universal condemnation, this is not an issue which can be solved at national level.

The UK jury is contributing to a global project led by the Centre for Deliberative Democracy and Global Governance at the University of Canberra which aims to run a Global Citizens' Assembly on genome editing. The UK Jury, along with similar deliberative processes across the world, will feed into this global assembly. Projects are already confirmed in the US, Australia and China. Projects in Belgium, France, Germany, Brazil and South Africa are also well advanced. 

What will happen in the UK

The UK Citizens' Jury is currently taking place with full running dates of 13-16 September 2022. 

The Jury is formed of 22 patients, family and carers affected by genetic disorders. It is deliberating on the following question:

Are there any circumstances under which a UK Government should consider changing the law to allow intentional genome editing of human embryos for serious genetic conditions?

The Jury is hearing evidence from a diverse group of specialists and people with lived experience during their deliberations. In answering the question, they will develop a set of recommendations for policy makers and scientists. These recommendations will be published. Alongside this report, we will publish an account of how the process worked and what considerations the Jurors took into account as they developed their recommendations. 

The UK Citizens' Jury on Genome Editing is also a creative project. We have commissioned Green Eyed Monster Films in collaboration with Lambda Films to film the entire Citizens’ Jury and release a short documentary about the event. The film will be made publicly available  with the aim of supporting a wider public to understand how the Jury worked and to contribute to the debate. We will also share the footage with a team of film-makers based in Australia (Genepool Productions) who are working on a series for worldwide distribution. 

Project oversight

We have convened an Oversight Group to provide input to and comment on: 

  • The overall framing of the Jury and key questions to be addressed 
  • Background/stimulus materials (ensuring it is comprehensive, balanced and neutral and accessible to a lay audience) 
  • The balance of experts invited to contribute to the Jury
  • Communications strategy 
  • Outputs from the dialogue exercises including written reports. 

The members of the Oversight Group are:

Mark Bale, former Deputy Director, Genomic Science Policy, Department of Health and Social Care

Catherine Joynson, Assistant Director, Nuffield Council on Bioethics

Sarion Bowers, Head of Policy, Wellcome Sanger Institute

Nick Meade, Director of Policy, Genetic Alliance UK

“I am incredibly excited to be partnering with Involve and Genetic Alliance to deliver the UK’s citizens' jury for the Global Citizens’ Assembly. It is paramount that public audiences across the world have a voice in policy on the future of genome editing technologies so that the technology is able to serve society in ways that are acceptable”

Project Partner Professor Anna Middleton, Wellcome Connecting Sc

“Genome editing raises many profound moral and ethical questions. It is therefore critical that publics around the world are fully involved in the debate about whether, when and how the technology should be deployed. The Global Citizens’ Assembly is an important step to supporting the development of this global democratic debate. We’re delighted to be working with Wellcome connecting science and genetic alliance on the UK citizens’ jury component of this important initiative.”

Simon Burall, Involve

Image credit: Alice Mollon