Who is science for? A brief reflection on the Third International Summit on Human Genome Editing
Arriving at the Third International Summit on Human Genome Editing a week ago, my entrance was temporarily blocked by a security guard who was concerned to prevent the entry of a small group of protesters handing out leaflets in the cold. They each wore a surplice bearing a red ‘stop’ sign and the motto ‘stop designer babies.’
The last international summit, in 2018 in Hong Kong, certainly cast a shadow. That was the event at which the Shenzhen-based biotech entrepreneur, He Jiankui, reported experiments that had, by then, resulted in the birth of two children with deliberately modified genotypes. That experience was seemingly enough to persuade the organisers to focus this third summit (for two days, at least) resolutely on therapeutic uses of somatic genome editing. Two basic strategies were discussed, one a cell-based therapy involving the transfusion into patients of cells that have been genetically modified in the laboratory to carry out a therapeutic function, the other involving the introduction of gene therapy agents directly to patients to modify the DNA in their own cells in situ. The experience of the last summit may also have accounted for the disclaimer with which successive presenters opened their talks (‘MY PRESENTATION IS NOT ABOUT HERITABLE GENOME EDITING’).
The decision to focus on somatic genome editing created a number of valuable opportunities. The summit seemed both to embrace more diverse perspectives than previous editions, and to involve a greater number of people working in the Global South. Granted, the dominant triangulation of research remained between the US, the UK and China (albeit that there was no sponsoring organisation based in China this time). But starting with a session on ‘hopes and fears’ for genome editing allowed the theme of global justice to surface early and to frame the discussions.
One notable feature was a session on the first day devoted to genome editing strategies for Sickle Cell Disease (SCD). SCD disproportionately affects those already more likely to experience structural disadvantage, whether within the societies of the Global North or in the SCD hotspots in sub-Saharan and North-East Africa, India and the Middle East. These disadvantages affect them at every level, from availability of diagnosis and support, to access to treatment and the likelihood of mortality. The summit heard movingly from Victoria, the first patient treated with a CRISPR-based gene therapy in US. The treatment had released her from the pain and limitation of the disease to lead the kind of life that unaffected people might take for granted. Her lived experience reflected a trope for the ambition expressed by many researchers at the conference: to find a ‘safe, effective, one-shot, curative and affordable gene therapy’.
There was some inspiring science on display, showing how approaches to genome editing therapeutics were moving successfully from systems that create toxic double-strand breaks in DNA to base editing and prime editing strategies, and the development of innovative delivery systems. This was not a scientific conference, however. Almost all the research described had already been published and discussed in the field. So, bracketing out what remained to be demonstrated in research (‘safe, effective, one-shot, curative’), it was really at the last hurdle (‘affordable’) that the discussion stumbled. And here a space of genuine engagement opened between what were hitherto essentially two audiences, scientific researchers and non-scientists, sharing the same venue.
In the last century, the question ‘who owns science?’ became salient following the determination not to allow the privatisation of knowledge about the human genome. Nonetheless (as speakers at the summit emphasised) the ‘human genome’ still remains largely the genome of the Global North. In closing the summit, members of the organising committee drew attention to their strongly stated call to action contained in the closing statement:
‘The extremely high costs of current somatic gene therapies are unsustainable. A global commitment to affordable, equitable access to these treatments is urgently needed.’
Despite the many cosmopolitan governance initiatives that the research community has proposed for genome editing – and the increasingly audible voices of publics in different nations, cultures and traditions – innovation systems continue to be structured by underlying economic, strategic and geopolitical interests. Perhaps this accounts for the call to action being framed in terms of equitable access to treatments already situated within those structures (‘these treatments’). And perhaps it is why it is stated in the passive voice.
Thanks. - very interesting. As one of the Research Ethics Committees in the UK that reviews gene therapy we recognise this issue but not sure what we can do!
Thanks, Hugh. I'm not sure this is one for the RECs at the moment! Two responses to this were implicit in the discussions at the summit, I think (not mutually exclusive). One is socio-political, the other socio-technical. If we set aside prioritising massive amounts of public spending for novel therapies and promoting overtly eugenic policies in an effort to limit demand, the first kind of response will focus on somehow circumventing a locked-in innovation system. The disruptive ambition is implicit in the call for inclusion of voices that are not present from the start, in the design of framing of an innovation system that delivers 'these treatments', always already costed and ready for market. I think the second kind of response offered was , intriguingly, the development of a 'general purpose' biological technology that could be simply adapted to deliver therapeutic interventions. Could genome editing become such a technology? Could the mechanism of action in each case be well enough characterised to short-cut the most expensive elements of current development processes? I wonder, now, whether this might give rise to the kind of question that could arrive before an ethics committee in time to come?
Thanks for taking the time to reply. I think RECs have two spheres of influence. Firstly our opinion on the proposal before us (bluntly Yes or No) and here I agree that it's not in the remit of our immediate considerations, although we can raise concerns - we have to review what's before us! However, the second sphere is the broader conversation (such as the one you attended at the international meeting) and I do believe we have expertise and experience that can contribute to this debate. We have experts and lay representatives (who now are "lay experts!") and we have a long track record of debates in considering these issues -unique in my view.
And here maybe we have a possible role - to ask our applicants in our discussion how are they proposing to develop accessible therapies, maybe not the one before us but maybe when they come back with their next study! I know we can only be a small voice but it might contribute something and I think many in fields such as cell therapy are looking at how to do this so we push against a door that may not be open but is at least ajar.
Realistically I think there will always be a slightly "Locked in innovations system" (I like your phrase ). It's in the nature of "Technological Economics" and I'm not sure we can get around it and if we don't recognize and accommodate this, your "disruptive ambition" will antagonize the innovators. And that gets us nowhere. Let's make it an "expansive ambition.
So I agree with your last question! Maybe Oxford A REC should meet Nuffield and see where we get!
Manuel de Chavez
Gracias por emitir la reflexión sobre la Tercera Cumbre Internacional sobre Edición del Genoma Humano
Gracias a usted por haber leído este blog, Manuel. Un cordial saludo.
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