A three day citizens' jury involving a national sample of citizens to discuss genome editing technologies with the aim of enhancing public conversation and political decision-making. This is part of the Global Citizens' Assembly on Genome Editing.
Problems and Purpose
This initiative was developed as part of the Global Citizens' Assembly on Genome Editing (Participedia case 7661) and as part of a research project. The citizens' jury was also filmed to be part of a documentary series on genome editing. [1]
Outcomes from the citizens' jury were intended to influence public conversation and political decision-making regarding genome editing technologies around the world. [2]
Background History and Context
The Australian Citizens' Jury on Genome Editing is a component of the larger Global Citizens' Assembly on Genome Editing, and contributes to the development of that. [3]
Organizing, Supporting, and Funding Entities
The project was co-organised by the Centre for Law and Genetics at the University of Tasmania and the Centre for Deliberative Democracy and Global Governance at the University of Canberra. Facilitators were from universities and a local non-profit organisation [4]
The project was funded by the Medical Research Future Fund Genomic Health Futures Mission.
Participant Recruitment and Selection
23 participants from around Australia took part in the national citizens' jury. [5] Participants were recruited using random stratified sampling (using demographics and "discursive representation").
Participants were given an information pack that outlined the issue of genome editing, current debates around it, as well as providing participants with an overview of what a citizens' jury is and what they are asked to do. [6]
Methods and Tools Used
The research agenda behind this initiative consisted of five phases.
Before the formal deliberation in Canberra, Phase 1 involved a scoping exercise to determine the key issues and developments in genome editing. This involved qualitative interviews with 34 national and global experts in genomics, academics and policy makers. Following this, Phase 2 involved the issues identified from expert interviews being mapped and benchmarked using Q Methodology and interviews with 30 participants simultaneously to generate an understanding of the general views around genome editing. Phase 3 was deliberation, which took place as the citizens' jury, and involved studying to what extent perceptions are influenced by deliberation, how decisions were deliberated, an analysis of how arguments were presented, and evaluating the process from participants' perspectives. Phase 4 considers the consequences of this deliberation into public debate and policy making, and surveys to what extent the views held by participants are seen in the broader community. Phase 5, similar to Phase 4, analysed how the citizens' jury and its findings influenced public debate and opinion about genome editing through a broad survey and studied how it has influenced policy. [7]
What Went On: Process, Interaction, and Participation
Participants were asked to consider the question "Under what conditions or circumstances might the application of human genome editing technology be acceptable?" [8]
Deliberation took place over four days, and involved expert presentations as well as small and large group deliberation. The first day involved introductions to key people, familiarisation with the citizens' jury process and a welcome reception. The second day involved participation guidelines, expert presentations and deliberations. The third day included a summary of deliberations so far, expert presentations, deliberations and deliberation reports. The fourth and final day involved refining recommendations, presenting recommendations to decision-makers, responses and feedback from decision-makers and regulators and closing reflections of process. [9]
Participants travelled to Canberra from around Australia to take part in the citizens' jury. They were given taxi vouchers to travel to their hotel, food vouchers for the hotel, and a bus was arranged to transport them to and from the hotel for the deliberative event. [10]
Influence, Outcomes, and Effects
At the end of the process, participants were overall quite positive about the prospects of genome editing. While they discussed the risks of it and thought "heritable genome editing" should not yet be done, there was overall support for research into it. There was a major focus on reducing suffering in genome editing and that it should be accessible under well considered regulation. Participants also noted that they did not hear strong critical views of genome editing. [11]
There was also large media attention around the event, such as live TV news interviews being conducted with the researchers and participants, as well as radio interviews after the event. There was also an Emmy-award winning science documentary team from Genepool Productions. The film crew is documenting citizens' juries from around the world discussing genome editing as part of the Global Citizens' Assembly on Genome Editing and for the upcoming three-part documentary series, Mutant.
Analysis and Lessons Learned
Much of this process and analysis around it is still ongoing as it is leading to the Global Citizens' Assembly on Genome Editing. One participant was happy to share they found the experience very rewarding and enjoyed learning from experts and contributing to the discussion around this topic in some small way. [12]
See Also
Dryzek, J et al. (2020). Global citizen deliberation on genome editing. Science. 369(6510). doi: 10.1126/science.abb5931
Hurlbut, J. B. (2019). Human genome editing: ask whether, not how. Nature. 565(135). doi: https://doi.org/10.1038/d41586-018-07881-1
References
[1] Australian Citizens' Jury on Genome Editing (2021) Australian Citizens' Jury on Genome Editing Information Packet. Available from: https://www.australiancitizensjury.org/information-pack
[2] Australian Citizens' Jury on Genome Editing (2021) About the Event. Available from: https://www.australiancitizensjury.org/about-the-event
[3] Australian Citizens' Jury on Genome Editing (2021) Our Research Agenda. Available from: https://www.australiancitizensjury.org/our-research-agenda
[4] Australian Citizens' Jury on Genome Editing (2021) Australian Citizens' Jury on Genome Editing Information Packet. Available from: https://www.australiancitizensjury.org/information-pack
[5] Australian Citizens' Jury on Genome Editing (2021) About the Event. Available from: https://www.australiancitizensjury.org/about-the-event
[6] Australian Citizens' Jury on Genome Editing (2021) Australian Citizens' Jury on Genome Editing Information Packet. Available from: https://www.australiancitizensjury.org/information-pack
[7] Australian Citizens' Jury on Genome Editing (2021) Our Research Agenda. Available from: https://www.australiancitizensjury.org/our-research-agenda
[8] Australian Citizens' Jury on Genome Editing (2021) Australian Citizens' Jury on Genome Editing Information Packet. Available from: https://www.australiancitizensjury.org/information-pack
[9] Ibid.
[10] Ibid.
[11] Australian Citizens' Jury on Genome Editing (2021) About the Event. Available from: https://www.australiancitizensjury.org/about-the-event
[12] Australian Citizens' Jury on Genome Editing (2021) Eradicate sickness, do not create superpowers. Available from: https://www.australiancitizensjury.org/post/eradicate-sickness-do-not-create-superpowers