31 October 2016
Graduate of the MA in Medical Ethics & Law, Kings College LondonAppeared in BioNews 875
The Nuffield Council on Bioethics recently published its preliminary report 'Genome editing: an ethical review' (see BioNews 871). This review was launched to a wider audience on 7 October, in the genteel surroundings of the Royal Geographical Society in South Kensington.
The afternoon was divided into two sessions. The first was broadly devoted to livestock issues, and the second to human reproduction. Nonetheless, there was a good deal of crossover and equally applicable discussion.
Professor Jackie Leach-Scully spoke about the potential impact of genome editing on disabled individuals and their families. She also highlighted the fact that genome editing is often placed in the moral continuum of preimplantation genetic diagnosis (PGD) and prenatal diagnosis (PND), but she argues that this is fallacious. PGD and PND are selective and eliminatory – we have to ask if a condition is severe enough to counter the moral weight of selecting an embryo or terminating a pregnancy. With genome editing, she argues, the moral gravity is lifted, and this opens up broader questions about what kinds of people should exist. What kind of world do we want to live in? What is a 'good' or 'good enough' life?
Debate about the role of bioethics was a recurring theme in the presentations, as well as the Q&A. Geneticist and embryologist Dr Helen O'Neill's traffic-themed presentation – 'It all depends on what you do when you see a light turn orange. Personally, I speed up' – called for regulation to keep up with the science, or get out of the way.
Other panellists seemed to take this as an implied criticism of bioethics. Perhaps this was due to Steven Pinker's high profile piece, 'The moral imperative for bioethics', which was penned when CRISPR first emerged into the public consciousness last year.
The majority opinion of the panel seemed to be that the Council, and bioethics in general, should be leading the discussion, not simply reacting to research. Professor Leach Sculley said it was a pity that bioethicists are seen as 'party-poopers', and Dr Peter Mills put it beautifully: 'If you wait until the science is all done, then you've left it rather too late to have a debate about how that will effectively shape how that science may develop … In my view anyway, [bioethics] is not doing its job if it's just saying yes or no to something. The role it should play is much more subtle one, more to do with how we find the pathway to the kinds of future we imagine we might want.'
This idea was parallelled in the discussion of genome editing in livestock, as to whether bioethics should lead or follow public debates. Professor Peter Braude addressed the panel on how badly the introduction of GM crops were handled, and Sam Alvis from Wellcome Trust questioned whether there was a public interest in genome-edited livestock, given that the press coverage so far has focused overwhelmingly on human applications.
Professor Richard Ashcroft's response was: 'What the public are interested in is not necessarily what's in the public interest!' (scholars of media law and privacy injunctions will find this familiar). Given ongoing consumer mistrust of GM crops and the 2013 horsemeat scandal, even if there is negligible press interest in this story now, it appears prudent that bioethics should be involved from an early stage in the development of animals which are destined to enter the human food chain.
In terms of public debate, it was agreed that public understanding campaigns would be crucial and should cover ethics and science. But they should also cover less immediate topics, such as the implicit value in funding basic scientific research that can lead to unexpected benefits. CRISPR itself is a wonderful example of a hugely useful tool that was discovered during research on interactions between bacteria and viruses, not genome editing.
However, the flow of information should be a mutual exchange. Professor Leach Sculley explained that the working groups providing 'ethical reflection and recommendations for governance' should be grounded in understanding of views of multiple publics', including not just the general public but also clinicians, researchers, patients and policymakers. She also warned that some individuals or groups may face barriers to contributing, through disability, articulacy, economic barriers or reluctance to express themselves publicly for fear of abuse or harassment.
The Council's Director, Hugh Whittall, concurred: 'We must put ourselves in position to hear what people want to say.'
Factually and ethically the event did not cover much new ground, and attendees hoping for a debate may have been disappointed. In terms of its stated function of launching the review, it explained well why the Council decided to publish at this stage. Although the methodology of the next phase was not clearly outlined, some useful insights into questions it might seek to answer were raised. It was demonstrated that the working groups are taking this very seriously, hearing a broad range of as many views as possible.Ultimately, the event raised more questions than answers, but that seems to be the point – now is the time for questions. For answers, we'll have to wait until the working parties publish their findings in 2017.