21 Apr 2018
A fortnight ago the US National Academies of Sciences and of Medicine published their long anticipated report Human Genome Editing: Science, Ethics, and Governance. Last week we had a meeting of our own Nuffield Council Working Party on human genome editing, which has given me both the excuse and the exigency to read the report in full. (I should say that, though the Nuffield working party discussed the report at length, the reflections that follow are personal ones, formed prior to that discussion. Nevertheless, since our present preoccupations at the Nuffield Council are with intergenerational genome modifications, these are the aspects of the report on which I’ll focus.)
There are a great many things to admire about the National Academies’ report. It is technically informative and provides a valuable and, in the context, valiant, contribution to the unfolding public debate about human genome editing (see posts passim). It is valiant both because it takes a substantive step beyond previous interventions by imagining a governable pathway from research to innovation in inheritable, intergenerational genome modification and because, at a number of points, it can be seen struggling against the institutional frame in which it is cast, in order to acknowledge the territory through which this pathway would cut. The fact that this struggle, ultimately, is vain, and, on its face, the report is recuperated by its institutional and disciplinary context is not the fault of the authors but an inherent limitation of their process.
One of the things that I especially like about the report (as with last year’s report on mitochondrial donation techniques – see my previous post on this) is its decisiveness in setting intergenerational genome editing within the context of a discussion of the importance of genetic relatedness. (Though I think this is not so simple as it may seem, adopting this position at least avoids the ‘therapeutic fallacy’ of concluding that because human genome editing involves a medical procedure the proper way to think about it is as a treatment for a medical condition, i.e. within the discourse on biomedicine.) Casting the question in terms of procreative liberty is no doubt the right way to present it as a rights problem, which (as the authors explain in their presentation of the US process) places the burden of justification on (state) interference. But by this point the issue has already become de-natured: in order to reduce the issue to a juridical form it has been hypothesised as a particular case with a particular set of consequences for a small, determinate number of people. Placing it in the laboratorium judicialis extracts it from the broader context that would allow questions about genome editing as a technology.
What we have here is ethics in the laboratory rather than ethics in the field, although this is a complaint (if it is to be taken as a complaint) that could be made about much of the literature of ‘bioethics’, which is transfixed by aporetic debates over liminal questions (treatment/ enhancement, normal function/disability), in an attempt to make them categorical for juridical (or quasi-juridical) processes. Beyond these juridical questions about whether to permit or refuse genome editing (or in what cases it should be permitted or refused), however, lie important and complex technological questions: questions about what might happen when genome editing is used in certain conditions, how it might nestle into discourses, institutions and jurisdictions; how it might creep across distances both functional and geographical; what incumbent techniques and counterfactual possibilities it might displace; to what moral transformations it might inure; and what mitigations can be foreseen against its negative externalities.
There are two reasons to pay special attention to the technological or technoscience aspects of genome editing.
The first reason has to do with scientific and technological globalism. Even if we say ‘it shouldn't happen here’ I think it is a pretty good bet that human reproductive genome editing will happen elsewhere, and this, like it or not, changes the context in which we make decisions. Despite whatever moral protectionism goes along with populist political nationalism, this context is almost impossible to ignore. For the National Academies’ the best they can do is attempt to create a moral distinction that would insulate responsible researchers in the US (and elsewhere) from any premature, misfiring of the technology. Thus, if a maverick researcher in Freedonia, say, were to attempt a risky treatment in order to steal a march on their more circumspect peers, this aberration could be ruled outside the ecumenical mainstream. (There are parallels to mitochondrial donation here, too.) The difficulty is that the off-the-shelf principles that are advanced to provide the standard for responsible innovation in genome editing are so general as to be capable of supporting contradictory conclusions. The cosmopolitan ambition, underlined by the apophthegm from Louis Pasteur (“La science n’a pas de patrie, parce que le savoir est le patrimoine de l’humanité”), is surely not to attain a level of abstraction that can accommodate every difference, but to produce alignments and affinities, while simultaneously repudiating certain outcomes as ‘unethical’. This is what I described elsewhere as the work of ‘geo-ethics’ (see my post on CRISPR in South America), which is also, in a certain sense, a geopolitics. If the National Academies’ report can be seen as a contribution to this work, then the principles in the report can only offer a standard more in the sense of a banner rather than of a norm, an orientation rather than a limitation for further debate.
The second reason to pay attention to the technoscience aspects of genome editing concerns the potential ways in which successful technologies unfold in real cultural and societal contexts. Once the technology has been used, so long as it is not profligately inefficient or recklessly teratogenic, it is difficult to imagine restricting the use of the technology to just those few, emblematic cases – important though they are – in which reasonable, alternative approaches are unavailable. (This for the simple reason that ‘reasonable’ and ‘alternative’ are situated judgements.) If genome editing becomes refined, as it surely will be, through repeated cycles of use in a range of contexts, it may well become the general purpose genetic ‘technology of choice’, displacing comparatively blundering technologies like preimplantation genetic diagnosis (PGD) along the way and disrupting people’s expectations about control over human biological inheritance. (This is a point I made from the floor when I had the pleasure of attending the National Academies’ evidence session in Paris last year; I hope it will not seem Pooterish if I mention it again now, but the assumption in the report seems to be that conditions in the future will in many respects resemble those in the past – a necessary condition of scientific reasoning but a hopeless premise for ‘predictive sociology’. This is especially important, because of the global dimension, which means that these issues unfold more like weather systems than civil engineering projects.)
Though, on its face, the National Academies’ report is compelled to circle back on the question of regulatory authorisation, which provides the obligatory focus for its recommendations, it seems to contain a second report of a different kind. There are passages, such as the discussions of slippery slopes (on which there is much more to be said) and social consequences (the space given to the question of eugenics is important, for example), where the report threatens to escape the juridical frame: historical context offers a launch pad for the dialectical elaboration of different positions, and the report starts to flow. But these are inevitably recuperated by the juridical framing. Thus, for example, the discussion of the potential consequences of genome enhancements for social inequalities is curtailed by being concentrated into a hypothetical point-decision about the authorisation of a clinical trial: "These discussions would include consideration of the potential for introducing or exacerbating societal inequities, so that these values can be incorporated as appropriate into the risk/benefit assessments that will precede any decision about whether to authorize clinical trials." (p.123) There is a valuable overture in the chapter on public engagement, which acknowledges the role of participation in responsible research and innovation as an alternative to bureaucratic or neoliberal approaches to technology governance. Ultimately, however, this excursion, too, is brought back to public engagement as, effectively, an ‘input’ into the prospective decision of an institutional review board (equivalent to a research ethics committee in the UK). This denies engagement any critical or political dimension and makes it simply either an accelerant or retardant, rather than the exploration that it needs to be.