Heritable human genome editing: making ‘societal dialogue’ meaningful

Jackie Leach Scully is Professor of Bioethics and Director of the Disability Innovation Institute UNSW. She was a member of our working group on genome editing and human reproduction.

The Consensus Study Report of the International Commission on the Clinical Use of Human Germline Genome Editing, produced by an international commission convened by the US National Academies of Medicine and Sciences and the UK’s Royal Society, is careful to state that its focus is firmly on the scientific and technical sides of heritable human genome editing (HHGE) rather than the social and ethical. Although other commentators have properly pointed out the artificiality of that divide and the implausibility of a science untouched by social and ethical values, it is nevertheless a step in the right direction of acknowledging that HHGE’s ethical and social implications are of a scale that requires something more than a couple of chapters tucked in at the end of a report.

The Consensus Study Report still has much in common with earlier reports that gave more houseroom to ethical issues, including the National Academies’ earlier (and broader) Human genome editing: science, ethics, and governance (2017) and the Nuffield Council on Bioethics’ own two reports, Genome editing: an ethical review (2016) and Genome editing and human reproduction: social and ethical issues (2018). All emphasise the need for public engagement in decision making about HHGE: what the 2018 Nuffield report called a ‘broad and inclusive societal debate’, and this report ‘extensive societal dialogue’.

Gesturing towards comprehensive public involvement in decisions about HHGE is laudable. Unfortunately, the ritual invocations in reports like these often give the impression of either being a performative duty, or revealing extreme naivety about the real complexity of the kind of public engagement needed.

Meaningful public engagement or consultation is difficult. Effective engagement involves a battery of decisions about the scope, methods, and aims of the exercise. Here are just are few:

• How do we translate the goal of ‘broad and inclusive’ into the practicalities of a recruitment drive?
• What does ‘inclusive’ actually mean here – that is, which social groups should we aim to enrol, and how confident can we be that we haven’t omitted someone relevant?

Key stakeholders should of course be prioritised, and in this case that includes those at the sharpest end of the technology: individuals and families with genetically-associated conditions. But with a radically innovative technology like HHGE that could have significant indirect effects on public thinking as well as behaviour, everyone in society is a potential stakeholder. Given the impossibility of enrolling the entire population in an engagement exercise, whose views should take precedence? Should every single gene disorder be separately represented? Ought chronic illnesses and disabilities be handled differently?

Once the parameters of inclusion have been set, how do we ensure that involvement is genuine: that the right groups have been contacted, the appropriate representatives identified, and that we have made it possible in practice for people to take part? Are engagement activities fully accessibility to people with physical or cognitive impairments? Accessibility doesn’t just cover the buildings where meetings are held, although that in itself (I can say from experience) will dramatically reduce the options in even the best-equipped communities: it means that all online, written, and media communications have to be accessible as well, with significant implications for the budget.

Accessibility also often hinges on the choice of engagement methods, which in turn depends on the mid-range goal of the exercise. Is it to count votes for/against HHGE in some kind of referendum; or to explore the range of and basis for people’s views; or to reach a public consensus; or something else? Each goal is best served by particular methods that come with their own price tags of money, time, and sometimes other costs. For example, intensive deliberative events can give valuable insight into people’s values and reasoning but can inadvertently exclude people who can’t easily take time away from work or caring commitments. Online polling assumes that people are literate, and have both internet access and a free evening.

Moreover, heritable human genome editing is technically sophisticated, and most participants won’t be experts at the outset. They will need to be given information (‘upskilled’ in current terminology) to feel properly equipped to reflect and discuss it with their peers. The challenges of providing an adequate grounding in human genome editing that is accessible, doesn’t take weeks, and is genuinely nondirective (and perceived by all sides as nondirective) are formidable.

And then once all the stakeholders have had their say, what we will have is a mass of information. What we almost certainly won’t have is a yes/no indication of what to do. At some point public engagement will have to move from the accumulation of contradictory viewpoints, interests, and rationales to an analysis that produces something like a nationally tolerable consensus. Who will be given that task, what methodology will they use, and why should the general public trust them? The Nuffield Council on Bioethics 2018 report recommended a separate, independent agency be established with the function of promoting public debate and engaging with a range of public. In something of an understatement, it added that launching a new body was “unlikely to find a warm welcome in the current political climate”, and how right that was.

But the most crucial issue is exactly what question(s) the ‘broad and inclusive societal debate’ should cover. The new report, like others, asserts that each society needs to decide whether or not to use HHGE at all. Yet the global debate is by and large being conducted as if the question has already been answered, and what’s under discussion now is how to regulate and govern it. Paradoxically, the more effort put into holding a truly comprehensive discussion, the more likely people are to interpret that as meaning HHGE has already been given the go-ahead: even non-cynics know that governments are unlikely to fund a mass public consultation if there was a genuine possibility of being told not to use the technology in the first place.

None of this is an argument against public involvement in these once-in-a-lifetime decisions. It is a plea to be clear about what it will take to do it properly. If not, meaningful policy participation will be replaced by a tokenistic democratic exercise; perhaps better not done at all.