A citizens' jury was convened to hear from people with lived experiences of genetic disease about genome editing and how the government should respond to scientific advances around it.
Problems and Purpose
The purpose of the jury was to inform decisionmakers, researchers and the publics of patient and carer perspectives on genome editing. They would hear from people with lived experience of genetic disease, and from this get a sense of whether there was community interest to change the law, since people with lived experience of serious genetic conditions are also those most affected by the decision [1]. 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 (GA) on Genome Editing. As of November 2022, the Global Citizens’ Assembly is a proposed exploratory project bringing together participants from national deliberative processes on genome editing from around the world. The UK citizens' jury (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 intentionally 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.
The Oversight Group, made up of key people who were part of genomics institutes, was responsible for ensuring the process, and framing of the questions and discussions within, was as unbiased as possible. [2] & [3]
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 and/or who are “eligible” to use genetics clinics [4]. 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
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. [5]
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, and a team of independent evaluators. Additional people were there to observe, including the expert leads, some of the expert speakers, and other organisers. Each day, 1-2 jurors volunteered to wear a mic for 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 deliberation 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, as well as an optional documentary screening of the issue that evening [6]. 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 reflect on the presentations, ask questions and clarify what was shared. Q&As were carried out in 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 pre-recorded 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
Jurors continued working on their visual map, with the day beginning with reflections from organisers and jurors and a reminder of the task. Jurors heard from additional 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 a policymaker's 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 visual map which was arranged at the front of the room using flipcharts and post-it notes.
Later on in the day, an indicative vote on the question for deliberation was held to gauge how jurors were feeling halfway through the process. In response to the question, 16 voted ‘yes’, two voted ‘no’ and three were unsure. Jurors had the opportunity to discuss the outcomes of the vote, with some challenging the wording of the question saying it encouraged a positive response. There was also discussion about the deliberation process, specifically regarding confusion around the connection between the visual map and the question. [7]
Day 3
In response to feedback from jurors, organisers rearranged some aspects of the third day. Jurors were asked to indicate their position on the question on a scale of 0-10 rather than the simple yes/no/unsure vote as used previously. This was done in the hopes of enabling more nuanced views to be communicated and then explored during deliberation. Organisers also worked on sorting the map of issues in between Days 2 and 3 to clarify 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 rounds of open discussion 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-it notes.
A final positioning exercise was held, again along the 0-10 scale. The results showed an overall positive response to the exact question, but with 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.
Towards the end of the deliberation process, and as jurors were finalising recommendations, they were given another prompt to consider during Days 3 and 4:
If the UK government was to consider changing the law to allow the intentional genome editing of human embryos for serious genetic conditions we believe that there are things that need to be in place before any decisions are made.
Jurors then went through a five-step process to help identify high areas of consensus between participants for the recommendations. [8]
Influence, Outcomes, and Effects
At the end of the deliberation process, most participants (17 of 21) felt that the government should "consider changing the law to allow intentional genome editing of human embryos for serious genetic conditions," and that there should be discussions around this already happening. [9]
The Citizens' Jury Report outlined the jury's 15 recommendations from the four days of deliberation. These were drafted in response to prompts provided by the facilitators to help construct them. The recommendations were grouped under four themes:
- Develop a clear plan and timeline if discussions begin about changing the law so that the potential benefits of genome editing can be made available for future generations
- Put in place effective support to ensure equitable access to treatment
- Protect the rights equally of those who decide to proceed or not to proceed with treatment
- Develop an equitable process and framework to reduce the wider social inequalities and potential for harm [10]
These recommendations were intended to be given to policy makers and scientists. [11]
One juror who lives with a rare disease commented that they were "grateful" to have been part of the process and to have their perspectives heard on the situation. [12] It was noted that jurors hope policy makers continue to take into account the lived experiences of people when responding to developments around genome editing. [13]
Analysis and Lessons Learned
An evaluation report of the UK Citizens' Jury on Genome Editing considered three components in their evaluation: internal quality, external quality and deliberative integrity. Key findings from this assessment revealed that regarding internal quality, "the citizens' jury uncovered the diverse perspectives of the patient community; diversity within a group does not necessarily mean equality within a group; facilitators served as mediators to amplify underrepresented voices; and the citizens' jury was an emotionally demanding experience." [14]
Regarding external quality, it was found that: "jurors and expert speakers have a measured expectation about the citizens' jury impact; experts find that jury recommendations offer a distinct input into policymaking; and filming the citizens' jury has the potential to spark a wider conversation about genome editing." [15]
Regarding deliberative integrity, it was found that: "responsiveness was the organisers' key integrity practice; speakers played the role of 'conversation partners,' not 'all-knowing experts' who imposed their views on the jurors; time was one of the main pressure points; and debriefing sessions were an open space for reflexive practice." [16]
Jurors expressed appreciation for being able to explore the issue about genome editing in more depth and having the time over the week to discuss it. [17] It was also noted that time was a pressure point, as is not unusual for deliberative processes. There were occasions when jurors felt rushed, fatigued from the lengthy days and heavy content, as well as the physical and emotional tolls the topic and process placed on participants. Many felt more could have been done to accommodate jurors around this. [18]
During deliberations, jurors acknowledged the importance of having people with lived experience participate in the conversation about genome editing. [19]
The organisers were quite responsive to jurors’ questions and confusion around certain elements of the process. An example is through organisers reassessing and adjusting the mind map between Days 2 and 3 of the process to enhance clarity and connection to the deliberation question. Another example is seen in the voting process in response to the question, changing from ‘yes’, ‘no’ or ‘unsure’ options to a scale of 0-10. [20]
See Also
Dryzek JS, Nicol D, Niemeyer S... Middleton A, et al (2020) Global citizen deliberation on genome editing. Science, vol. 369, issue 6510, pp 1435-1437, Available at https://doi.org/10.1126/science.abb5931
McKie, R, (2023) UK government urged to consider changing law to allow gene editing of embryos. The Guardian. Available at: https://www.theguardian.com/science/2023/mar/04/uk-government-urged-to-consider-changing-law-to-allow-gene-editing-of-embryos
University of Cambridge (2023) Should we allow genome editing of human embryos? Available at: https://www.cam.ac.uk/stories/citizens-jury
References
[1] Wellcome Connecting Science (n.d.) uk citizens’ jury on genome editing. Available at: https://societyandethicsresearch.wellcomeconnectingscience.org/project/uk-citizens-jury-on-genome-editing/
[2] Wellcome Connecting Science (2022) Report of the UK Citizens Jury on Human Embryo Editing. 13th-16th September. Collated by Involve. Available from: https://societyandethicsresearch.wellcomeconnectingscience.org/project/uk-citizens-jury-on-genome-editing/
[3] Involve (n.d.) (When) Should We Allow Genome Editing? UK Citizens’ Jury on Genome Editing. Available from: (When) should we allow genome editing? | involve.org.uk
[4] Wellcome Connecting Science (n.d.) uk citizens’ jury on genome editing. Available at: https://societyandethicsresearch.wellcomeconnectingscience.org/project/uk-citizens-jury-on-genome-editing/
[5] Ibid.
[6] Wellcome Connecting Science (2022) Report of the UK Citizens Jury on Human Embryo Editing. 13th-16th September. Collated by Involve. Available at: https://societyandethicsresearch.wellcomeconnectingscience.org/project/uk-citizensjury-on-genome-editing/
[7] Ibid.
[8] Ibid.
[9] Ibid.
[10] Ibid.
[11] Involve (n.d.) (When) Should We Allow Genome Editing?. Involve UK. Available at: https://involve.org.uk/our-work/our-projects/pioneering-innovation-practice/when-should-we-allow-genome-editing
[12] Wellcome Connecting Science (n.d.) uk citizens’ jury on genome editing. Available at: https://societyandethicsresearch.wellcomeconnectingscience.org/project/uk-citizens-jury-on-genome-editing/
[13] Limmena, M, (2023) Genome editing of embryos supported by UK citizens' jury. Progress Educational Trust. Available at: https://www.progress.org.uk/genome-editing-of-embryos-supported-by-uk-citizens-jury/
[14] Curato, N, Parry, LJ, & van Dijk, L, (2023) UK Citizens' Jury on Human Embryo Editing: Evaluation Report
[15] Ibid.
[16] Ibid.
[17] Wellcome Connecting Science (2023) United Kingdom Citizens’ Jury on Human Embryo Editing [video]. YouTube. Available at: United Kingdom Citizens' Jury on Human Embryo Editing
[18] Curato, N, Parry, LJ, & van Dijk, L, (2023) UK Citizens' Jury on Human Embryo Editing: Evaluation Report
[19] Wellcome Connecting Science (2022) Report of the UK Citizens Jury on Human Embryo Editing. 13th-16th September. Collated by Involve. Available at: https://societyandethicsresearch.wellcomeconnectingscience.org/project/uk-citizensjury-on-genome-editing/
[20] Ibid.
External Links
Involve Report of the UK Citizens' Jury on Human Embryo Editing
Evaluation Report on the UK Citizens' Jury on Human Embryo Editing
Handbook for the UK Citizens' Jury on Genome Editing