04 Apr 2023
I wrote recently on this blog about the disappointingly peremptory resolution by the US National Institutes for Health that they would not fund any use of genome editing technologies in human embryos. Although an understandable default, given the history, personalities and politics involved, my point was that while there may be ethical reasons not to support the research there may also be ethical reasons to support it, and to decline to examine these in the novel conditions created by, for example, wide ranging debates on pre-implantation genetic diagnosis and cell reconstruction techniques for the avoidance of mitochondrial DNA disorders, and innovations in biotechnology (notably the CRISPR-Cas9 genome editing system), amounts to an abdication of responsibility if you exert a major influence on the production of scientific knowledge for your society. The US Department of Health and Human Services has now commissioned the National Academy of Science to deliver a report on the scientific, medical and ethical considerations relating to gene editing and the Academy has set up an advisory group (which, despite earlier calls from its chair and other members for an international and interdisciplinary debate, apparently has only one non-US and one non-scientist member).
A major influence on the production and transfer of scientific knowledge on this side of the Atlantic is the Wellcome Trust, the world’s second largest non-governmental funder of medical research. The Trust is currently supporting the consensus-building, interdisciplinary (though science-driven) Hinxton Group to examine genome editing and (it must be declared) is one of the three, hands-off funders of the Nuffield Council (along with the Nuffield Foundation and the Medical Research Council).
The Trust is also a signatory to the just-published joint statement on genome editing subscribed by many of the most significant UK research funders (the Association of Medical Research Charities, the Biotechnology and Biological Sciences Research Council, and the Medical Research Council) as well as the Academy of Medical Sciences. The statement acknowledges the potential value of genome editing as a tool for the production of scientific knowledge and, when conditions are right, anticipates supporting its translation into treatment for people with established diseases. On the subject of germ line genome editing, a procedure that would introduce heritable genetic changes that would be passed down through generations, the statement is supportive of research but it withholds support for the time being from any move into treatment. The statement is carefully weighted on this point; it seems to acknowledge that while, in the one case, the conditions are largely to do with clinical risk, in the other they are of broader public moral interest.
On its face the statement seems calculated to provide a bulwark against the current craze for moratoria against human germ line editing that has swept parts of the world where whatever is not forbidden is permitted, or where unreflective advertences to a longstanding ‘global moral consensus’ pass for moral reasoning. Granted, moratoria may be either unnecessary (given the sufficiency of existing arrangements), ineffective (given that they bind only those in whose interest it is to be so bound) or disingenuous (dissimulating ‘air cover’ for a policy land grab on the part of vested interests). Here in the UK, of course, there is a de jure moratorium, in the shape of the Human Fertilisation and Embryology Act 1990. (This uncharacteristic, ‘continental’ approach to legislating for human embryology – what is not permitted is forbidden – shows that this is one area in which liberal individualism has been made to do obeisance to morale publique.) Given this, the statement is less about resisting inconvenient moratoria than getting the ball rolling on a reasoned and temperate review of the established orthodoxy.
When we think about the ethics of germ line genome editing it is important to keep in view the ends sought rather than being dazzled by the technology. It makes a significant difference whether these are conceived as ‘implementing germ line gene editing’ or ‘delivering treatments for disease’ or ‘developing scientific knowledge’ (or even ‘increasing the fair distribution of reproductive options’). Like what is now called ‘mitochondrial replacement therapy’ (which does not ‘replace’ mitochondria and is not a ‘therapy’ in any straightforward sense) the debate about germ line editing is at least as much about advancing science and the value we place on extending the reproductive options of those who know they are at risk of passing on genetic disease as it is about Hippocratic values. These are not small things, but they are easily confused or obscured.
This question of how we see the ends is crucial to a diverting subterfuge that sprang up just before I went on leave this summer. It was provoked by an opinion piece in The Boston Globe by psychologist Steven Pinker to the effect that bioethicists should not intervene in shaping scientific development. This was followed by some aerated debate in the blogosphere and not a little soul-searching among those who identify closely with the practice of bioethics.
Pinker’s bioethicist is effectively a straw man, and makes one wonder whether the corridors of Harvard are stalked only by fey handwringers. In a subsequent interview Pinker more carefully distinguishes bioethics, and moral philosophy, from bioethicists of various stripes and makes it clear that it is not the discourse of bioethics to which he objects but rather any that do not subscribe to the kind of which he approves (he seems to relish the more muscular utilitarianism of Julian Savulescu, for example). From this viewpoint, one can begin to see why Pinker’s argument might have some force: we cannot predict the benefits of the pursuit of scientific knowledge (he argues) so we cannot legislate for science (as opposed to innovation) on the basis of anticipated consequences. So if the only permissible bioethics is a bean-counting consequentialism, it should ‘get out of the way’ of science. Only when we take our technologies to market, when we can see clearly what their ‘offer’ is, can we make the decision whether to buy or not.
Aside from the impoverishment of bioethics, there are at least two things that jump out as being wrong with this vision of science and innovation.
The first is the view of science as purified of all ignoble and extrinsic influence, guided only by the earnest search for knowledge. I don’t think Pinker buys this but it is strange that the only constraint to which he should object is moral constraint. That he does is perhaps an indication that he is writing against a particular target (he may have Collins in his sights here) and takes this peculiar version of moral constraint for the whole of bioethics.
The second is the view that the direction of scientific research is independent of the direction of past research and that all paths not taken are fully recoverable if we do not want to buy the product to which they have led. It is surely disingenuous that Pinker should require so much from ethics (qua utility calculation), that it should resist the cultural and economic power of locked-in technoscience, and he is surely aware of this.
The argument he is really joining is not about whether it is good to pursue treatments for serious disease, to extend knowledge or increase reproductive choice, but about whether the way we pursue these goals should be shaped by interest groups, corporations and the market or by democratic deliberation and social values. If the US debate so far is framed by Collins and Pinker, it is as if we have only heard from Bernie Saunders and Donald Trump.