21 Apr 2018
In a very short space of time, new techniques (such as the CRISPR-Cas9 system) have revolutionised possibilities for genome manipulation. Initially, the focus is on myriad research opportunities, but the potential therapeutic, or more radical ‘enhancement’ scenarios, come straight to the fore.
Inevitably, and rightly, there are calls for public dialogue, alongside the examination of ethical issues, questions of governance, and regulatory challenges and options. The recent Hinxton Group statement in the UK, and the International Summit on Human Gene Editing both expressed the need for wide conversations. In a broader sense, the Nuffield Council on Bioethics itself identified the need for a ‘public ethics discourse’ for emerging biotechnologies in general.
The furore surrounding a 'secret meeting' of scientists to explore constructing a human genome in a cell line—examined here by Andy Balmer—demonstrates how high the stakes are. It is easy for the aims of researchers or others to be misconstrued, or for scientists and policy-makers to be unaware of the hopes, interests, fears and concerns of others, unless there is open and substantive discussion and debate. Mistrust, once generated, is hard to address. But what might be the purposes of these discussions (and there are many)? When should they take place? Who should be involved?
The Nuffield Council on Bioethics, in partnership with Sciencewise, recently convened a workshop to examine these questions of public involvement in relation to genome editing. Participants included public involvement specialists, policy-makers, and natural and social scientists involved in this field. We hope that the report, Public dialogue on genome editing Why? When? Who?, is a useful contribution to further thinking. The take-home message from the workshop, though one should be careful to generalise from this single event, is that more urgency and need for public dialogue was expressed by the research community than by policy-makers. That may change as the potential becomes more visible. But all agreed that wider conversations, initiated in diverse ways, for diverse purposes, by diverse interest groups, would be valuable, indeed essential for surfacing and sharing different perspectives and perceptions. A networked ‘observatory’ that could collate, share and reflect on the results of those conversations, and aid and support ongoing conversations, would be useful to all.
A subsequent meeting convened by the Wellcome Trust extended the workshop discussions, and we await their report with interest
.And in all of this, it is worth being aware that the interest, if not hype, around genome editing, tends to perpetuate the mind-set that genes determine everything: 'if only we could modify/control those genes we could solve so many of our problems.' It is unlikely to be so simple, however good our 'editing' becomes, as this trenchant review of Siddhartha Mukherjee’s The Gene: An Intimate History asserts.
It was very interesting that policy makers were less motivated to have a wider public discourse around these complex issues than researchers.
Speaking from the environment field, we see that gene-editing raises many complex issues that shouldn't be worked through by an 'elite' policy making machine alone but deserve and require wider public discussion, including understanding why different groups of people reach or hold different positions.
Together with Research Council BBSRC and Forum for the Future we published a deliberation-aid to help conversations on one part of this field (synthetic biology).
We hope that the public are properly involved in these debates.
The deliberation aid is available at:
Mike Childs, Head of Research, Friends of the Earth