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
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. There is currently no further information about how this stage of the process was conducted. 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 ca
