The paper, ‘Global citizen deliberation on genome editing’ is calling for the creation of a global “citizens’ assembly”, made up of ordinary people who are tasked with considering the ethical and social impacts of this emerging science, in humans, animals and plants. The idea was born out of a film-research trip Sonya undertook almost two years ago.
In late 2018, Sonya attended the ‘Second International Summit on Human Genome Editing’ in Hong Kong, a trip supported by development funding from Screen Australia. She was sitting mere meters from geneticist He Jiankui as he made the startling announcement of the birth of the worlds’ first genetically edited humans – twin girls named Lulu and Nana.
This bombshell revelation about the so-called CRISPR babies caused shock and outrage throughout the world. Both scientists and the general public were alarmed by this controversial leap in the use of genome editing.
“I realised that although global experts were keen to engage the public in discussions around genome editing, there was no established method to allow people, across cultures, languages and nations, to be involved in deciding what happens next. This led me to meeting Professor John Dryzek, one of the founding theorists behind the idea of deliberative democracy.” Sonya Pemberton, Genepool Productions
Together with Centenary Professor John Dryzek, from the Centre for Deliberative Democracy and Global Governance at the University of Canberra and 25 leading researchers from across the globe, the group are calling for the creation of national and global “citizens’ assemblies”, made up of members of the public, who will consider how this technology should be used and who should make those decisions. The implications of powerful DNA-altering technology are too important to be left to scientists, regulators and politicians alone, argue the team.
“Science is of course one of the world’s two leading general scientific journals. I see getting our statement on the need for a global citizens’ assembly published there as a huge validation of what we’re trying to do.” Professor John Dryzek, Centre of Deliberative Democracy and Global Governance
Central to the design of the Global Citizens’ Assembly is the ambition to provoke a global conversation. Genepool Productions in association with December Media have developed a science documentary series, entitled ‘Mutant’, that will film the process and explore how citizens of the world weigh in on one of the most consequential and complicated issues of scientific ethics. SBS Australia and ARTE have come on board as broadcast partners of the documentary series.
“SBS are hugely excited by the potential of this new documentary series ‘Mutant’. It promises to be a unique social experiment that explores the intersection of science, ethics, diversity of opinion and how we make the big decisions about our future.” Joseph Maxwell, Head of Documentaries SBS
The Global Citizens’ Assembly will take place after several national versions have been conducted. The Australian Citizen deliberation has been fully funded through the Federal Government’s Medical Research Future Fund Genomics Health Futures Mission and is scheduled to take place in April, 2021. Events in the US, UK, and China are also fully funded by organisations including the Kettering Foundation, National Institutes of Health and the Wellcome Genome Campus.
The Global Citizens’ Assembly has received funding through an Australian Research Council Linkage Grant. The grant will go towards funding the world’s first truly global citizens’ deliberation on genome editing, and also analyse the impact of the documentary series on public understanding of complex, fast-evolving science and technology. Genepool has exclusive access to filming this unprecedented event.
“Following global participants on this epic journey will be a privilege – and an adventure. It will be incredibly exciting to witness what people from very different backgrounds think is OK, or not. Will they find common ground? Can they help shape the future of genome editing?” Sonya Pemberton, Genepool Productions
The documentary series ‘Mutant’ will be an epic, cinematic and provocative television series capturing an unprecedented international social experiment. “It’s really exciting to be part of this landmark event – where the filmmaking is a key component of the science of democratising one of the most significant issues of our time.” Tony Wright, December Media