21 Apr 2018
The Human Gene Editing Summit in Washington DC was much anticipated and generated many commentaries, before, during and after its completion. Headlines appeared on a daily basis, describing how 'top scientists' assembled to discuss the 'excitement' of genome editing and its potential to deliver 'cures' for almost all diseases, but how there are also 'ethical concerns' over 'designer babies' and scientists 'playing God'. Giddy stuff.
Indeed, one conclusion I drew from attending the Summit was that we all need to take a collective deep breath….and relax. Amongst the chatter and general din there were important points made by many participants and observers, but it will take time to consider these carefully.
Many observers are queueing up to praise or condemn genome editing, particularly germ line editing; to evoke its potential to transform research and development in fields as disparate as agriculture and medicine for the benefit of mankind, or to caution against enthusiasm for attempted control of people’s fates by intervening in nature (more on the concepts of nature and naturalness in this recent blog post).
One upshot of all this is a sense of a fork in the road in respect of human gene editing, at which we must choose a future direction, with potentially dramatic consequences. I think what is needed now is some sobriety: you might call this a plea for dull cogitation. This includes a meticulous tracing of how we got to where we stand now and careful deliberation of the choices that exist henceforth, requiring contributions from as many people as possible (on that note, please see the Council's open call for evidence). Some themes that will dominate this deliberation – or ‘conversation’ as it has been described - were prominent at the Washington summit, and I will elaborate on these now.
Firstly, let's talk a bit about science and scientists (though science is not my focus here). Much admired, feared and maligned – a 'Marmite' profession. (Declaration: I am a scientist). But the class of 'scientist' is not monolithic; it is a diverse group of individuals with wildly differing attitudes to almost everything that matters – both scientific and non-scientific. They squabble endlessly about whose model is the best, who really understands what's going on, where the funding should be targeted; and they complain ceaselessly about their lot in life, from precarious career paths, to poor pay and being misunderstood.But this is their collective strength. They have (varied) vested interests, of course, but they adhere in the main to a tried and trusted method and are judged harshly by peers when their standards drop.
So it was no surprise that in Washington there was scientific disagreement over the prospects for human germ line gene editing. (You may, as I do, prefer 'genome editing' but I will stick with the name that the organisers used). Some believe that human disease biology just isn't a good match for gene editing: either the diseases that we might wish to combat are too complex to 'edit' – as is the case for polygenic diseases such as diabetes and schizophrenia (unless one considers hundreds of simultaneous interventions). Or the disease is monogenic – such as cystic fibrosis – in which case it is simpler and safer to use preimplantation genetic diagnosis (PGD) to select the desired embryos, rather than constructing them by gene correction.
Of course, problems remain with this vision: if, in future, genome sequencing of individuals becomes commonplace, couples will be able to compare their genome mutation profiles prior to reproduction and, depending on advances in our understanding of genome biology, this knowledge might pave the way for much more extensive intervention in human reproduction by assisted reproductive technologies such as PGD, even without genome editing.
Other scientists emphasised rare circumstances in which PGD might not be appropriate – due to the low probability of detecting an embryo of the desired genotype – circumstances in which a safe and efficacious form of genome editing, by no means assured at this stage of research, might be the only way of preventing the birth of children with 'unwanted genotypes'. The rarity of such situations should not necessarily count against them when considering whether such an intervention is ethically justified: the question is whether germ line gene editing would be justified right here, right now. The context-dependence of this decision, being embedded in the contingent and unpredictable lives of ordinary individuals with particular desires and needs, is what makes it so complex.
In the previous paragraph I used the expression 'unwanted genotype' quite deliberately. It elicits many questions, such as "unwanted by whom?" If some genotypes are undesirable, how are we to address the accusation that there is an implicit value judgment being made here about people currently living with diseases, disorders and disabilities? The prefix 'dis-' expresses a negative, an absence. But have these individuals been invited to take part in 'the conversation'? Indeed, the effective reduction of the value of a human being to its genotype is, say some, part of the general commodification of human life caused by genomics and its technological spin-offs. These are not new questions. I believe that it is possible (and necessary) to disrespect a disease whilst valuing the life of the individual that suffers from it. But we should proceed in a manner that is sensitive to the attitudes of individuals who may feel threatened by gene editing (and PGD) and be aware of the fuzzy edges associated with the concept 'disease'.
The first morning of the Summit included a talk on the history of the eugenics movement, primarily in the US. We were asked to consider whether some of the reasons given for rolling out somatic and germ line gene editing in humans resonate with the earlier logic of eugenics. To argue that eugenics was based on bogus biology is not really an adequate answer (though true): we were asked to consider motives, not knowledge. Such ethical considerations are part of the wider concerns of social scientists which (to the chagrin of some) occupied the final session of the summit. The societal perspective – rich in historical reflection and sensitive to the injustices perpetrated by individuals and institutions against minorities and the vulnerable – generates novel questions in the case of gene editing, because the decision to proceed (or not) with germ line gene editing requires numerous institutions to grapple with possibilities that do not arise with older technologies and to establish policies and practices that enshrine the relevant verdict (or, more likely, verdicts).
How, then, are we to reconcile the perspective of the hypothetical individual who, for whatever reason, sees value in the use of germ line gene editing in the context of a discussion of their reproductive choices with a medical practitioner, with the sorts of concern expressed above about the kind of society we live in? These might be broadly (and no doubt crudely) called the conventional medical ethics model and the sociological model. How can they meaningfully meet? The answer is not obvious, at least to me. Example: if a couple in an IVF clinic have requested genome editing for their future embryos (one day, in an appropriate jurisdiction) and are told that the answer is "no", because to edit their embryos would not be an appropriate response by our society to the injustices of human history and the risks of a dystopian future, they might be perplexed. These perspectives met in the hall of the National Academy of Sciences during the summit, but perhaps only by sharing a room. What is required, if possible, is a meeting of minds. But that requires a shared language – and this was not evident in the hall. I overheard a comment that there were actually two meetings occurring – with distinct concerns and languages – including the many conversations in the gaps between sessions. Perhaps 'two' is an underestimate. We may all profit if the conversations beyond the hall see the light of day. These are conversations during which suspicions are aired about motives. But unless these perspectives look each other in the eye, it will be difficult to build trust and, therefore, to progress in good faith.
I have chosen not to address other key issues that were (albeit briefly) discussed in Washington: for example, the roles of commercial interests and religion. I finish, instead, with a comment about inclusivity. In a democracy it is important that all voices be heard and assigned equal value – whilst acknowledging the distinct ethical perspectives they often express. But inclusivity comes at a potential cost: it may result in a deferral of decision-making due to the inevitable complexities that arise when there are many voices to integrate. But our institutions – including our committees that take decisions – must function. So a pragmatic balance must be struck. The Washington summit began a conversation that needs to be long and hard – one that may still result in frustration for some when the fork in the road is negotiated. Of course, a conversation requires speakers and listeners – and there will need to be evidence that listening has occurred, to avoid disillusionment. But any disappointment may be more palatable if it is seen to be, like an adverse election result, an unavoidable consequence of living in a society in which, through democratic institutions, people want and need and value different things. Meanwhile, the final summit statement: i) endorsed future genome editing of human embryos in a research context, if legal; ii) chose (rightly, in my opinion) not to close the door on the possibility of future germ line edits in a clinical context; iii) called for the creation of an inclusive international forum to discuss potential clinical uses of gene editing. Our conversation will continue.