Researchers call for general public to shape decision making around DNA-altering technology

Ethical and social implications of powerful DNA-altering technology are too important to be left to scientists and politicians, researchers say in a new paper published this month, and instead should be led by a global taskforce made up with members of the general public in multiple countries.

Dr Marit Hammond from Keele University’s School of Social, Political and Global Studies is part of a team of 25 leading researchers from across the globe who have published a paper in the journal Science calling for the creation of a global citizens’ assembly made up of the general public, who would be tasked with considering the ethical and social impact of genome editing. 

The authors come from a broad range of disciplines, including governance, law, bioethics, and genetics.

The ethical and social questions around both the potential and the threat of gene editing were demonstrated in 2018 when geneticist He Jiankui announced he had used the technology to create two genetically-altered babies. 

Gene editing has vast potential to improve life such as by offering ways to alter mosquitoes and wipe out malaria, boosting crop resilience, as well as potentially preventing conditions such as sickle cell disease, cystic fibrosis and even some forms of cancer. 

In contrast, it could also pose potentially harmful threats such as creating accidentally mutated disease-carrying insects, sterile crops, new treatment-resistant illnesses, and babies engineered for super-strength or musicality.

In the Science paper, the researchers say a global assembly should comprise at least 100 people – none of whom would be scientists, policy-makers, or activists working in the field.  

Trials of the concept, funded by organisations including the Kettering Foundation, National Institutes of Health, the Australian Government, and the Wellcome Genome Campus, are planned to take place across the globe including in the US, UK, Australia and China.

Dr Hammond, lecturer in politics at Keele University, said: “Creating a deliberative space like this across the entire globe, on a topic on which such global reach is crucial, is unprecedented. We will be able to see what deliberation can do in an area as multifaceted and contested as genome editing.  

“I am excited to contribute to this global consortium facilitating productive dialogue between very diverse people and societies. This will be hugely rewarding research, with a real impact on the policy discussion. The first step on this exciting journey is our regional case study here in the UK, which we’re designing from the start to closely tie in with the Australian jury and all the other regional case studies.”

Professor John Dryzek, Principal Investigator and head of Australia’s Centre for Deliberative Democracy and Global Governance at the University of Canberra, said: “A global citizens’ assembly will be a major step forward as the architecture of global governance of genome editing gets constructed. It will bring to bear the considered views of citizens of the world, who will be able to think about the content of public values and principles for regulation of the technology that could receive reflective acceptance in all parts of the world.”