Leading researchers from around the globe—including the University of Canberra—have found the ethical and social implications of powerful DNA-altering technology are too important to be left to scientists and politicians.

Designer babies, mutant mozzies and frankenfoods: these are the images that often spring to mind when people think of genome editing.

The practice – which alters an organism’s DNA in ways that could be inherited by subsequent generations – is both more complex and less dramatic than the popular tropes suggest.

However, its implications are so profound that a growing group of experts believe it is too important a matter to be left only to scientists, doctors and politicians.

Writing in the journal Science, 25 leading researchers from across the globe call for the creation of national and global “citizens’ assemblies”, made up of lay-people, tasked with considering the ethical and social impacts of this emerging science.

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

“These implications are so important,” said Professor John Dryzek, head of Australia’s Centre for Deliberative Democracy and Global Governance at the University of Canberra and lead researcher on the project. “They should be examined not just by those in the field, but by the general public: teachers, plumbers, butchers, bakers and candlestick-makers.”

The immense potential, and threat, of gene editing was vividly demonstrated in 2018, when geneticist He Jiankui announced he had used the technology to create two genetically altered babies.

Dr He was eventually jailed by Chinese authorities, but his rogue work threw crucial questions about gene-editing humans into the spotlight. How should this technology be used – and who should make those decisions?

The questions go well beyond our own species. Gene editing potentially offers a way to change mosquitoes and wipe out malaria, to boost crop resilience and reduce starvation, or to produce pigs full of organs easily transplanted into humans.

It can also can potentially prevent conditions such as sickle cell disease, cystic fibrosis and even some forms of cancer.

But every ‘good’ promise, at least in the popular imagination, is mirrored by a ‘bad’ one: accidentally mutated disease-carrying insects, sterile crops, new treatment-resistant illnesses – and babies engineered for super-strength or musicality.

Professor Dryzek and colleagues believe that citizens’ assemblies – groups of lay-people tasked with diving deep into the ethical and moral issues thrown up by genome editing – will provide a valuable guide for scientists, doctors and politicians around the world.

“The promise, perils and pitfalls of this emerging technology are so profound that the implications of how and why it is practised should not be left to experts,” said Professor Dryzek.

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

The international meeting will take place after several national versions have been conducted. Events in the US, UK, Australia and China are already planned and fully funded by organisations including the Kettering Foundation, National Institutes of Health, the Australian Government Medical Research Future Fund Genomics Health Futures Mission, and the Wellcome Genome Campus.

Projects in Belgium, France, Germany, Brazil and South Africa are also well advanced.

“The fact that they are made up of citizens with no history of activism on an issue means they are good at reflecting upon the relative weight of different values and principles,” said Professor Dryzek.

Paper details:

Global Citizen Deliberation on Genome Editing Journal: Science

URL: https://science.sciencemag.org/cgi/doi/10.1126/science.abb5931