11 January 2016
ByAppeared in BioNews 834
Sir Mark Walport, the UK's Chief Scientific Adviser, gave the keynote address at the Progress Educational Trust's annual conference, where he highlighted the complexity of assessing emerging science and technology, particularly in relation to genome editing.
Sir Mark used his address to make a plea that when examining the fast-emerging science that is genome editing it at least be viewed in 'the most sensible way', regardless of the particular lens we wear – as families who might benefit, as researchers who are working with cutting edge science, as the public or the Government.
And by that, he means not asking imprecise 'non-questions' such as whether it is a 'good' or a 'bad' thing – for the issue is far more complex than that.
Trying to qualify 'good and bad' emerging technologies conflates science with values, said Sir Mark, which ultimately only ever results in one view trumping another. Indeed, as a scientific adviser, Sir Mark acknowledged that his views certainly don't always trump those of the policymakers he advises, since he doesn't look through the same lenses as the Government.
But crucially, by looking through other lenses and 'getting into other minds', he believes the discussion will be much improved.
The lens through which families look at genome editing and the potential treatments it could provide gives the 'strongest pull' in any debate, since these are the potential beneficiaries of the science, said Sir Mark. This is what makes patients the best advocates for emerging technologies.
From researchers' perspectives, rapid technological development has transformed treatment opportunities, and while clinical applications are a while away, progress is being made to include the potential for germline editing in future.
The public lens concerns itself with with fairness, resource allocation and its myriad different personal values, while the Government looks at the issues through many different lenses of its own.
Finally, Sir Mark stated that from an international point of view, the UK has an excellent reputation for science, and the regulation, discussion and debate around mitochondrial donation highlights this.
He added that the existence of the HFEA, Human Fertilisation and Embryology Authority, as a regulator in this area 'shows we are capable of working in a way that engages with both scientific and public audiences', thereby making space for all of those different lenses.
It is for this reason that Sir Mark recommended that the UK should lead the way in the debate about genome editing of human embryos.
To try and resolve the science versus values discussion, Sir Mark closed his remarks by stating his belief that the HFEA plays a vital role: not only does it take 'scrupulous care' in assessing a wide range of data and evidence, but its public engagement is comprehensive, it builds trust in the community at large and it works closely with legislators.
The audience at the session, which was chaired by Timandra Harkness, was then invited to put questions to Sir Mark.
From the first few questions, the audience seemed particularly interested in the science versus values debate. First, Sir Mark stated that he did not argue for decoupling science and values, just that we be clear which lens we are looking through when we discuss emerging technologies. He warned that people can accuse science of doing something wrong, when really it's their ethics that makes them believe that.
Sir Mark also remarked that scientists sometimes become advocates without realising, and take time to adapt to this role. But being suspicious of science because of value-laden terminology is futile, since science aims to determine how the world works, which is not in itself suspicious.
How we use technology is a subject for all of us to determine and biomedicine isn't the only area of emerging science that needs open discussion, said Sir Mark. Perhaps it is because of the many views we have about genetic research that public debate is encouraged, he suggested.
The next questioner asked whether, in light of the advocacy role played by scientists, there is a danger of over-selling new technologies, to which Sir Mark replied that there definitely is, particularly in the quest to make definitive findings. He said he would like to see more evidence of meta-analyses and less pressure on promoting single papers since meta-analyses are rare and can 'change the whole story'.
Sir Mark said that choices have to be made about funding and governance, that good questions have to be asked of researchers and the quality of research has to be evident. He said he believed a 'variety of criteria' add up to excellence.
The next question raised the difference between the UK and European view of emerging technologies and with particular reference to mitochondrial donation and EU concerns about the prohibition of eugenics. The questioner asked whether it concerned Sir Mark that the UK is 'more accommodating' than it's European counterparts.
Sir Mark cited his 2014 Annual Report 'Innovation: managing risk, not avoiding it' which looks at this disparity in more detail. He believes that EU laws do conflate science with values because different European countries have fundamentally different views about technology, thereby highlighting the 'international lens' that exists. Sir Mark believes there is no absolute right or wrong when debating these issues, and that the best approach would be to recognise Europe's plurality and accommodate it, enacting laws that contain opt-out clauses.
The final questions focused on future research in this area and the UK's role in that.
Sir Mark agreed that there is a lot more research to be done around genome editing, he mentioned in particular the lack of understanding about off-target effects and lack of specificity of results. However, more research is being done, he said, including - and not limited to - the 100,000 Genomes Project. In some ways, he said, if we answer questions about genome sequencing, questions about genome editing may become a subset of that.
Sir Mark's final comments were that the process through which scientists change research into results for the public to use is 'enormously exciting', and that 'we are at the foothills of that right now' where genome editing is concerned. In truly diplomatic style he stated that, while many would argue there are situations in which the implications of such research are 'valid' for use, his own opinions on the matter are irrelevant.PET would like to thank the sponsors of its conference - Merck, the Edwards and Steptoe Research Trust Fund, Ferring Pharmaceuticals, the London Women's Clinic, the Medical Research Council and Wellcome Trust.