This Citizens' Jury brought together patients and relatives affected by genetic conditions to deliberate on whether the UK government should consider changing the law to allow intention genome editing of human embryos.
Problems and Purpose
The purpose of the jury was to inform decisionmakers, researchers and the publics of patient and carer perspectives on genome editing, and to get a sense of whether there was interest from this community to change the law, since people with lived experience of serious genetic conditions are also those most affected by the decision [citation needed - process plan]. The jury was asked to deliberate and provide recommendations in response to 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?
A secondary aim of the jury was to inform the Global Assembly on Genome Editing.
Background History and Context
The UK Citizens' Jury on Genome Editing is connected to the proposed Global Assembly on Genome Editing. As of November 2022, the Global CA is a proposed exploratory project bringing together participants from national deliberative processes on genome editing from around the world. The UK CJ is one such national process.
The UK process is also a standalone project with its own purpose. Distinct from the standard model of other CJs, the UK process involved participants with lived experience of genetic conditions rather than a random selection of the general public.
A key impetus behind the project was the 2018 revelation of a Chinese scientist, He Jiankui, who intentially edited the genomes of twin embryos, resulting in the world's first genome edited babies. The outcry that followed included calls from the scientific community for a global public dialogue and debate on genome editing, since the technology has been developed at a much faster rate than both public debate and governance and regulation.
Organizing, Supporting, and Funding Entities
The UK CJ on genome editing was organised by staff at Wellcome Connecting Science, where the jury also took place. Participants were recruited through Genetic Alliance UK. The process was delivered by Involve and filmed by Green Eyed Monster Films and Lambda Films.
Participant Recruitment and Selection
Genetic Alliance UK is a network organisation supporting people affected by genetic conditions around the UK. For the recruitment, they put out an open call for participants, asking for people who were interested in or had an open mind about genome editing and learning more. From the pool of respondents, organisers then selected a final group that reflected broadly the demographics of people who attend genetics clinics [citation needed] The final jury consisted of 21 participants.
Methods and Tools Used
The process followed a Citizens' Jury model.
What Went On: Process, Interaction, and Participation [citations needed]
The jury lasted four full days, along with a welcome dinner the evening before it started. The entire process was hosted at the Wellcome Connecting Science campus in Cambridgeshire.
Jurors sat on three tables, each with a facilitator. The composition of the tables was mixed up each day. The film crew were also present, along with their equipment, and a team of independent evaluators. Additional people observing including the expert leads, some of the expert speakers, and other organisers. Each day, 1-2 jurors volunteered to be micd up by the film crew, and jurors and expert speakers were also invited to be interviewed throughout the process.
Day 1
The first day aimed to introduce the jury to the process and the issue. Organisers and facilitators explained the purpose of the jury, the planned agenda for the week, and the jury collectively finalised their conversation guidelines that were drafted the night before over dinner.
The jury started to learn about the issue of genome editing and relevant aspects through presentations from expert speakers. Speakers covered topics such as introduction to DNA, genes and editing, legal and policy contexts and ethical and social contexts.
Each speaker presented for 7-8 minutes, and jurors then had the opportunity to ask questions and clarify things. Q&As were carried out in a speed dialogue and panel formats. Some of the speakers were also expert leads for the jury, meaning that they were present for most of the four days. Most speakers presented in person, whilst those not able to attend presented via a prerecorded video.
As they were introduced to the key issues and different perspectives, facilitators supported the jurors to start thinking through the potential pros and cons of genome editing and begin building a visual map to explore priorities and uncertainties, risks and benefits
Day 2
The day began with reflections from organisers and jurors and a reminder of the task. Jurors heard from further speakers, with an emphasis on exploring a range of perspectives on the question at hand. Perspectives presented included clinical, private sector, research science, Christian and Islamic viewpoints, as well as a view from policymakers perspective and context of the UK government. Again, a speed dialogue format was used for jurors to ask questions. Facilitators continued to support jurors to contribute ongoing issues and questions to the map which was arranged at the front of the room using flipcharts and post-its.
Later on in the day, an indicative vote on the question was held to gauge how jurors were feeling halfway through the process.
Day 3
In response to feedback from jurors, organisers rearranged some aspects of the third day. For example, jurors were asked to indicate their position on the question a scale of 0-10 rather than the simple yes/no vote, to enable more nuanced views to be communicated and then explored during deliberation. Organisers also worked on organising the map of issues in between days 2 and 3 to make clearer the connection between the map and the question jurors were tasked with answering.
Reflecting on the results of the positioning exercise, jurors then turned to identifying any cross cutting themes or principles that were relevant for everyone, regardless of their position on the question. In the afternoon, two round of open space enabled jurors to deliberate on these themes in more depth, in small, self-facilitating groups.
Day 4
On the final day, jurors and organisers worked towards developing, refining and finalising recommendations on the question. As with day 3, the plan for the day was adjusted slightly to respond to jurors' needs and questions. For example in the morning session, organisers led a discussion on what is meant by a 'serious genetic condition' in the current legislative context and interpretations of the term 'serious'.
Whilst jurors did work on refining and developing their recommendations, there was not enough time for this to be finalised and typed up in a report. Organisers decided it was more important that jurors have the time to develop the substance, so the group agreed that Involve would type up their recommendations afterwards and circulate them to the jury for final approval, since everything was written on flipcharts and post-its.
A final positioning exercise was held, again along the 0-10 scale. The results showed an overall positive response to the exact question, but a spread of views and levels of enthusiasm. For a few jurors, now was not the right time for this to be considered and they were sceptical that their conditions could be met in order to justify changing the law.
Influence, Outcomes, and Effects
Data missing:
- final report
- short film - where it will be shown, when etc.
- who has the jury's report been given to etc
