Cosmos Q&A: How far with genome editing?

An international group of 25 researchers last week called for national and global “citizen assemblies” to be created to consider the ethical and social implications of DNA-altering technology.

In a paper published in the journal Science, they argue that the issue is too important to be left to scientists and politicians, and that the questions and implications go well beyond our own species.

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

Cosmos spoke with two of the Australians: Professor John Dryzek, Head of the Centre for Deliberative Democracy and Global Governance (CDDGC) at the University of Canberra, and Dianne Nicol, Head of the Centre for Law and Genetics at the University of Tasmania.

This is an international effort and work already is under way to bring it to fruition. How did it come about and what stage are things at?

The idea of a deliberative global citizens’ assembly was first proposed in a 2011 Global Policy article John wrote with André Bächtiger, and Karolina Milewicz.

The idea of doing the first one on genome editing crystallised a couple of years ago when Sonya Pemberton of Genepool Productions contacted the Canberra group and Dianne with the idea of a documentary series that would both inform and cover the assembly.  Since then we have assembled an international consortium, and Missions Publiques has come on board as a key organisational partner.

National deliberative processes are at various stages of organisation in Brazil, China, the US, the UK, Australia and elsewhere. We have some funding from the Australian Research Council mainly in order to research the role of documentary film in association with a global assembly, but we need substantially more funding to make a full-scale version of the assembly happen. We hope the Science article will help build momentum.

It’s an interesting idea, but is it wise? Social media shows us the risks of lots of loud voices and vested interests.

A deliberative citizen process of the kind we propose is one antidote to the domination of loud voices on social media, and the domination of vested interests in politics more generally. Experience with such processes shows that participating citizens are fully capable of reflecting on the merits of different arguments and positions and reaching considered judgments.

Our hope is that the results of their deliberations become widely disseminated and so improve the quality of discourse in the public sphere more generally – including on social media.

What has been the response to the idea, and the paper?

The idea has generated a lot of enthusiasm in the communities of deliberative practitioners and academics around the world, many of whom have come on board as partners, and we have received positive responses from scientists in the field and people associated with bodies such as the World Health Organisation. The paper has only just been published so it is a bit early to say anything about response to it, beyond the extensive media coverage it has received already in many countries.

How will you decide the agenda, KPIs and boundaries? Can it work in a world that can’t even agree to agree on the science of climate change?

The initial charge for the global citizens’ assembly will be ‘Should there be global principles for the regulation of genome editing technologies?’ The citizens’ response to this question will then condition the substantive agenda, the precise contours of the principles identified as most important is then a matter for the citizens’ themselves. Their final report can note areas of disagreement as well as agreement.

The genome editing issue may be more tractable than climate change because positions aren’t so set in stone.  And many of the impasses in climate governance are the result of the kind of politics of special interests that citizen deliberation can help counteract. We note the success and impact of recent citizens’ assemblies on climate change, notably the Convention Citoyenne pour le Climat in France, which was largely organised by Missions Publiques, one of our key partners on this global project.

Governance could be complex, not to mention the inevitable politics. How will it work in practice?

There are many organisational challenges, especially in moving to the global level. But we now have substantial experience with the design and implementation of national and a few transnational citizens’ assemblies and related processes that show exactly how to meet the challenges.

Cases where such processes have been derailed by politics are extremely rare; more frequent is the mobilisation of vested interests after the fact who do not like what a citizens’ deliberation has concluded.  But even there, the considered opinion of a citizens’ assembly has considerable moral and hence political weight.

Is there a risk that the issues become overshadowed by the arguments and inevitable conflict?

Arguments and conflicts are grist for deliberation, so they are an essential part of the process we propose, rather than a problem to be overcome. The debate is already open. What we propose is to introduce an important moment of reflection and reasoned citizen participation into the broader global debate, and so help improve its deliberative quality and its capacity to reach legitimate conclusions that reflect considered public values.

Genome editing inevitably brings to mind the Chinese doctor He Jiankui and his genetically altered babies. You mention this in your paper. However, you obviously see the issue as much broader, and as about more than just humans.

Concerns about the use of new genome editing techniques to manipulate the human germline and create so called “designer babies” are certainly front of mind. But genome editing can and is being used in many other ways. For instance, there are current clinical trials using genome editing as a potential therapy for sickle cell disease and other blood born diseases in humans. Early results are promising.

Genome editing techniques are also being used in the agricultural context in both plants and animals. There have been recent reports of a gene edit that created hornless cattle. Genome editing could potentially be used to eradicate pests, and it is being explored as a tool for nature conservancy. This essentially means that wherever there is genetic material there is the potential for it to be edited. Each type of use raises its own particular scientific, ethical, legal, social and political implications.

Should we be trying to regulate scientific enquiry? How do we determine what is “off limits” and what is “too far”?

All of our activities are regulated in one way or another. In any democratic society, the legal system is charged with maintaining the fundamental rights and freedoms to which that society ascribes value. However, in no society are the rights and freedoms of individuals absolute.

Scientific inquiry is not a regulation-free zone. Nor should it be. It is recognised globally that scientific inquiry involving human research must follow core ethical principles. In western society, these are autonomy, beneficence, non-maleficence and justice. These principles are reflected in ethical guidelines, professional standards and other forms of regulation. There are no exceptions, nor should there be. Society as a whole needs to decide what is “off limits” and what is “too far”.

Is this an issue specifically about genome editing, or is genome editing just a high-profile and headline-grabbing example of broader concerns around science, ethics and law?

Yes, genome editing is high profile and headline grabbing. But many do see the latest genome editing techniques employing CRISPR (clustered regularly interspersed palindromic repeats) as genuine game changers because of their reliability, precision and ease of use.

Human genome editing is one component of a greater scientific movement towards precision medicine. As Dianne has said elsewhere, the challenge from the legal perspective is to regulate the development, approval and use of precision medicine in ways that are clinically robust—safe and efficient, and for patient benefit—but also socially robust—accountable, democratic, and trustworthy, reflecting ethical norms and social values.

This means that, from the perspective of the individual, due attention must be given to such matters as freedom to choose whether and to what extent to participate, protection of privacy and freedom from discrimination. Social accountability further demands that due attention be given to such matters as distributive justice, solidarity and benefit sharing.

The uniqueness of genome editing is that these genomic modifications are not just capable of being undertaken on consenting adults, who personally benefit from such interventions. They can also be applied to human gametes, embryos, foetuses and infants.

Given that these interventions can affect both future people and existing people who currently lack capacity to consent, we must ask, as a society, whether this is a path we wish to follow, and how we might respond.

Scientists face many pressures that weren’t there in the past, particularly around funding and the pressure for results. Has that brought new ethical and legal issues to the fore?

Of course, the push to be first to publish creates particular problems for scientists. Added to this, the push to commercialise and to protect potentially patentable subject matter is affecting the norms of science.

The famous sociologist, Robert Merton talked about the norms of universalism, collegiality, disinterestedness and organised scepticism. There is a body of literature discussing the impact on these norms of the commercialised research environment. The competitiveness of the funding and publication environment add to these challenges.