NIH throws out the bathwater, baby and all.

Yesterday, the US National Institutes of Health announced that they would “not fund any use of gene-editing technologies in human embryos.”  The announcement came in a statement from the NIH’s director and former US head of the Human Genome Project, Francis Collins.  This area is controversial, and has been the subject of a great deal of recent debate, with some scientists calling for a moratorium on human embryology research, others on the move into treatment.

This debate has, no doubt, been sharpened by the recent publication of a scientific paper reporting the – on the face of it, discouraging – results of attempts to use genome editing in non-viable, supernumerary IVF embryos to edit the HBB gene, mutations in which are responsible for the blood disorder β-thalassaemia.

The NIH statement offers no clear reason for banning federal funding of human embryo research using genome editing.  What it did was to wave casually in the general direction of the provisional conclusions in some well rehearsed debates about using genetically modified human embryos in treatment.  The argument, again only implicit, was, in effect, that ‘since we (or our colleagues in the FDA) won’t permit genome-edited embryos to be used in treatment, there is therefore no reason to fund research.  So there is really no point considering the possible benefits that we might gain from such research or reconsidering the conditions of the moral consensus, which might have changed since we last looked.’

What was rather disappointing about this statement was its apparent refusal to engage in any form of reflection or argument.  And within this, what is most disappointing is that ‘ethical issues’, as so often in casual usage, appear to mean ‘cons’ or ‘reasons why not’.  As anyone who takes a moment to consider the issues will see there are ethical arguments on both sides. They are complex and contested.  They need to be thought through intelligently, inclusively and earnestly, and in the present context rather than being taken as settled for all time.

To say this is not to deny that we should take account of the dangers of creating path dependencies, of being led by the nose by scientific enthusiasm or of being seduced by technological solutions to other problems.  Indeed these are significant and real concerns that we should examine, but they are different from a moral ‘slippery slope’ that has become the  default response.

As I mentioned in a previous post, the Nuffield Council on Bioethics is initiating new work on genome editing, and just last week we held a workshop with invited participants to discuss how best to frame our approach.  We’ll publish a record of the proceedings on our website shortly.  What was clear from the meeting, though, is that we can’t know what we should do with genome editing just by staring at the technology – we need to think about its emergence in a complex conjunction of epistemological, technical, institutional, economic, political, ethical, legal, regulatory, etc. conditions and how its emergence transforms those conditions in return.

Debate about any instrumental use of human pre-implantation embryos in the US is politically sensitive and orchestrated by polarised and profoundly held religious and moral beliefs.  This is one reason why the cautiously progressive regulation we enjoy in the UK could not be exported there.  In 2001 George W. Bush famously banned the use of federal funds to support derivation of new stem cell lines from human embryos for research.  Of course, absent regulation, research continued without government control at the wild frontier, protected by the US Constitution.  Nevertheless, as a result of Bush’s ban, (later overturned by President Obama in 2009), leading researchers beat a path to the UK with its stable and robust regulatory system.  It would be a shame for the US to repeat this experience, not because it limits the creation of knowledge, but because it is not a response to the question that genome editing poses, any more than it is a solution to the problem with which it confronts the US authorities.

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