21 Apr 2018
We should all know about CRISPR-Cas9 (CC9) by now. We should know, at least, that it is a biological technique that claims to make precise, targeted alterations to DNA (and RNA) sequences in living cells, that it has diffused rapidly through the life sciences and that, as it has done so, it has spawned further variations and refinements. In the discourse on science it has given rise to a number of memetic (though surprisingly hard to evaluate) commonplaces. These include that, compared to all prior art, CC9 is highly efficient, more rapid, more affordable and considerably easier to use. This was the context, clearly laid out by Hervé Chneiweiss from INSERM (the French public institute for medical research) for a meeting I attended last week in Buenos Aires, Argentina. The meeting was organised by the ethics committee of INSERM, the Argentine Ministry of Science, Technology and Productive Innovation, the Global Forum for Bioethics in Research (around whose annual meeting the CC9 event was timetabled) and the Wellcome Trust. It brought together participants from the Caribbean, Central and South America, and Europe to discuss the governance of this significant new biological technique and of the emerging biotechnologies in which it may, in the reasonably near term, be implicated.
I had agreed to follow the presentation of national and sectoral 'positions' on CC9, with a presentation entitled 'A Global Position?' (My condition of acceptance was the addition of a question mark to the title I was originally given.) I'll say a little about how I approached this challenge before offering some reflections on the meeting more generally.
Since there is not, nor ever likely to be, a unified, global position on something so abstract as CRISPR-Cas9 genome editing there seemed to be two possible ways of approaching the charge I had been given. One would have involved giving a description of current 'positions' (laws, guidance and other articulated norms) in different parts of the world or in different sectors, and highlighting areas of consensus and difference. Some of these had, indeed, been laid out by Hervé Chneiweiss and Kathrine Littler of Wellcome Trust in their talks. So what I tried to do instead was to develop what I would have liked to call a 'geo-ethics' of genome editing (were it not for the fact that this term, 'geoethics', is already currency among earth scientists). The aim was to explore the forces and modes that were effective in the geographical transmission of norms relating to CC9 genome editing. I purposed to explore these through two orthogonal kinds of relation: firstly, relations between one nation, jurisdiction, community, region, etc. and another (or others), and, secondly, between the local and the global, the part and the whole. Relations, in other words, of transmission, translation and interference, on the one hand, and of globalisation, participation and differentiation on the other. I considered two cases in particular: genetic control of disease vectors (like the mosquitoes that transmit dengue, zika and malaria) and biomedical research (including human embryological research). My thesis in each case related to the potential of CC9, converging with other elements (for example, refinements in methods of delivery, knowledge from genome sequencing, facilities to design and produce guide RNAs) to create unusual moral and political problems in any project to resolve local and global, and ‘domestic and ‘foreign’ interests. I do not have space to lay out the argument or the possible responses to it here, but this brief background provides, I hope, a matrix for thinking about the remainder of the meeting, and why it deserves to be regarded as important.
The second half of the meeting was given over to presentations from different regional experts about the 'position' on CC9 in their own countries, local scientific communities or institutions. The speakers gave a picture of richly varied contexts and approaches, of laws in different states of development, of different relationships between ‘experts’, politicians and publics, of different levels of state intervention and private interest, and of how responses to CC9 referred to religious tradition, historical experience and cultural diversity. It is not possible to do justice to the richness of the information or the value of the insights that arose during the course of this discussion, but I drew out, and would like to call attention to, a number of themes of acute significance in the South American region and of wider importance.
Self-regulation: while in many South American countries there is no legislative basis for regulation or governance that would encompass genome editing, the role of scientists vis-à-vis the policy took different forms. We heard that in Brazil the 'scientists teach the regulators to make the laws'. Colleagues from Europe were keen to argue that scientific self-regulation, rather than categorical rules, should govern genome editing in its early stages, and that there was a need to 'restore' public trust in self-governance by responsible experts. (In my own presentation I mounted an argument to the effect that this should fail, and fail for reasons that were interesting because they had to do with the nature of CRISPR technologies themselves.) Among colleagues in the region there was, nevertheless, a widespread feeling that, while CC9 was not salient for most sectors of the regional public at present, it was important that information and discussion should flow between professionals and publics, and that public policy should be informed by public views.
External governance: Fabiana Arzuaga, spoke about the movement of regulation of the use of biomedical technologies such as gene therapy in Argentina from a system based on procedures (transplantation) to one based on the products (a medicine or ATMP). However, while gene therapy may be regulated according to the products used, genome editing (including by CC9) continues to be defined as a procedure. The debate about differential approaches to regulation is a familiar one in Europe but more in relation to plant and animal GMOs, where a largely procedural approach persists. While the focus of the discussion was on legal or formal regulation, one area that received less attention (though it was implicitly raised by Katherine Littler in her presentation) was how funding might shape technology innovation and therefore how important it was that funding decisions were themselves treated as morally important decisions. It is implicit, too, that such decisions are all the more important in cases of technology transfer between developed and developing economies.
'Moral arbitrage': We heard from Mexican colleagues at the meeting that, following the recently reported birth of a child conceived using a technique of mitochondrial donation, public IVF services in Mexico had been suspended. If this is the case, and these events are connected, this is a serious charge that must be laid at the door of the US-led clinical team (based at the New Hope Fertility Centre in New York City but with collaborators from both Mexico and the UK). We also heard that this might leave a longer and potentially even more significant legacy, in the expediting and hardening of long-discussed but hitherto un-enacted Mexican legislation on assisted conception. Having discussed the possibility of ‘ethical arbitrage’ during my presentation (which I characterised as a process that would annihilate differences between more and less restrictive jurisdictions through free movement among them) it was interesting to discuss that the response to this, rather than the ‘race to the bottom’ that many fear, could be ‘moral protectionism’ in a libertarian global context in which there was no serviceable global moral consensus.
Risk, uncertainty and social justice: in the summing up, it struck me that a lot of attention was given to the possibility of weighing the relative risk profiles of different strategies in different contexts. (The tension between welfarism and sustainability, and the way prospective CC9 technologies might directly reveal inconsistencies between public health and environmental ethics, was another theme of my presentation.) A point that struck forcefully in the discussion, however, was that many prospective CC9 technologies will have significant social justice implications, implications that are implicitly difficult to frame as quantifiable risks, and about which there is little relevant pre-existing evidence. Arguments of this kind can become notoriously hyperbolic (setting advanced biomedical technologies against the satisfaction of basic healthcare needs) and are inevitably complicated by the situation of the subject in space and time (local v. global interests, immediate v. intergenerational interests). Though difficult, however, this wider context and these speculative possibilities must surely have role, albeit a problematic one, in the moral discussion, but more than anything else this discussion needs to find a site where these interests can be engaged.
I think this question of engagement is absolutely key. We especially need to find new processes of engagement at a time when the world has been rocked by the failures of capitalism as a benign form of economic organisation and of popular democracy as a process for doing anything but aggregating prejudices. CC9 has been described as ‘democratising’ biological science: one can imagine a ‘liberation genomics’ that self-consciously harnesses the extraordinary potential of genome editing in the interests of social, global and intergenerational justice. But I think everyone present at the meeting in Buenos Aires was sensitive to the potential for technological artefacts to import norms (their politics and their economic structures) to new territories. (One of the most salient features of the discourse on CC9 has been the battle over the intellectual property rights to the underlying technology.) Securing the social benefits of genome editing, and avoiding the kind of geo-ethical agon that the Mexican experience with mitochondrial donation exhibits, requires us to ask how the public interest – the interest that is the reference for public policy – is constituted and articulated in the public sphere at different levels, and how, attending to the determinants of social, political and moral geography, a project of relating local and global public interests can be defined. And the more opportunities there are to engage with others about this the better.