If you like the idea of juries weighing evidence and delivering verdicts, you might also like the idea of global citizens’ assemblies deliberating over genome editing technology. Both juries and citizen’s assemblies reflect the same democratic impulse: the desire to expand the circle of decision-makers to include people from all walks of life, not just the highly credentialed. Everyone, the highly credentialed and the rest of us, will live with designer babies, gene drives, and the like, if they are ever deemed permissible. Shouldn’t we all have a say in whether they should come to pass?
That’s the question that motivated 25 leading researchers from across the globe to call for the creation of national and global citizens’ assemblies to participate in the governance and regulation of genome editing. The researchers, who possess expertise in areas such as governance, law, bioethics, and genetics, all took part in a Policy Forum that culminated in a paper that recently appeared in Science.
The paper—”Global citizen deliberation on genome editing”—emphasizes that genome editing is characterized by “a complex, uneven, and incomplete web of national and international regulation.” The paper also expresses concern that poor governance could lead to “ethics dumping.” For example, those wanting to edit genes to “perfect” humans might be tempted to seek countries with little governance capacity.
To help address such issues, the Policy Forum proposes that a citizens’ assembly should include at least 100 people: “Participants would be recruited throughout the world. Stratified random sampling would yield a broad spread in terms of nationality, cultures, level of education, age, income, religion, and gender.”
A citizens’ assembly, the Policy Forum suggests, could deliberate over the benefits and risk of genome editing. One of the risks was vividly demonstrated in 2018, when geneticist He Jiankui announced he had used the technology to create two genetically altered babies. He was eventually jailed by Chinese authorities, but his rogue work pushed crucial questions about gene editing humans firmly into the spotlight.
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 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.
These implications are so important, believe the Policy Forum’s 25 researchers, they should be examined not just by those in the field, but by the general public: teachers, plumbers, butchers, bakers, and candlestick-makers. “The promise, perils, and pitfalls of this emerging technology are so profound that the implications of how and why it is practiced should not be left to experts,” said John Dryzek, PhD, corresponding author of the Policy Forum paper and head of Australia’s Centre for Deliberative Democracy and Global Governance at the University of Canberra.
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 Policy Forum envisions that an international meeting could take place after several national versions have been conducted. Events in the United States, the United Kingdom, Australia, and China are already planned and fully funded by organizations including the Kettering Foundation, the National Institutes of Health, the Australian Government’s Genomics Health Futures Mission, and the Wellcome Genome Campus. Projects in Belgium, France, Germany, Brazil, and South Africa are also well advanced.
“Think of how we trust juries in court cases to reach good judgements,” suggested Dryzek. “Deliberation is a particularly good way to harness the wisdom of crowds, as it enables participants to piece together the different bits of information that they hold in constructive and considered fashion.”
Citizen-based deliberations are not unusual, as recent plebiscites in Ireland and Australia illustrate. However, the global assembly would be significantly different.
“The issues to be discussed in this assembly are different from the types of issues examined in other forums of this nature—for example, whether same sex marriage should be legalized,” said co-author Dianne Nicol, PhD, professor of law at the University of Tasmania. “I don’t think the goal of the citizens’ assembly should be to answer questions of whether heritable genome editing should be prohibited globally. Rather, it should be about better understanding community concerns and expectations.”
It will also be about social justice, added Baogang He, PhD, chair of international studies at Australia’s Deakin University: “A global citizens’ assembly will help to develop moral and political regulation on genome editing experiments, and to ensure fair access to the technologies. It will help global civil society guard against ill use of genome editing for the interest of a few.”
“Just as human rights are generally recognized as a matter of global concern, so too should technologies that may impinge on the question of what it means to be human,” wrote the authors of the Science article. “If the global community is serious about public participation on genome editing, it is time to move beyond the rhetoric. Robust, legitimate, democratic, and effective action drawing on lessons from existing practice is possible, and it is time to move in this direction.”
