18 July 2018

Debate, not 'designer babies' hyperbole, is what we need in genome editing

by Sarah Chan 
This week saw the publication of a much-awaited report from the Nuffield Council on Bioethics on human genome editing (Nuffield Council on Bioethics, 2018). Genome editing has been hailed as one of the great revolutionary technologies of our time. Its potential for human health applications, via somatic or heritable genetic modification, is simultaneously one of the most exciting and most controversial possibilities it offers. This report, from a body widely regarded as the UK’s de facto national bioethics advisory commission, thus represents an important milestone in the evolving discourse.
While there were perhaps no great surprises in the approach taken by the Nuffield Council Working Party or the overall tenor of their findings, the Report, as well as its complex and nuanced discussion of wide-ranging issues, achieved a number of very valuable things.
First, though not unexpected, its conclusion that there was no principled reason to rule out heritable genome editing in and of itself allows us to move forward to consider the much more ethically significant questions of what sorts of applications of genome editing, with what purposes and under what conditions, ought to be acceptable. On this, the Report highlighted two important principles: that the use of genome-edited embryos or gametes to create future persons should only be done where it is “intended to secure the welfare of and is consistent with the welfare of” (ibid.xvii) the future persons who might be born; and that, taking into account existing social inequities and the potential for genome editing to reinforce these, it “should be permitted only in circumstances in which it cannot reasonably be expected to produce or exacerbate social division or the unmitigated marginalisation or disadvantage of groups within society” (ibid.). That the report was embedded within these far broader social considerations and explicitly signalled the need to address them is among its most useful contributions.
Likewise, acknowledging (as the Report did) that there is no ‘bright line’ by which we can easily distinguish therapeutic applications from so-called ‘enhancement’ uses of technology enables us to open up a more genuine conversation about welfare and wellbeing, the diverse sorts of ‘good lives’ that we should be concerned to support as a society, and how we ought to be deploying our resources in order to do so. It is worth noting that in this, the Nuffield Council differed somewhat from the findings of probably the most significant other policy report so far, that of the US National Academies of Science, Engineering and Medicine (2017). The Academies’ report took the position that clinical research trials of heritable genome editing might be permissible only for “preventing a serious disease or condition”, with “reliable oversight mechanisms to prevent extension to [other] uses” (ibid., 6). Separating out the concept of ‘enhancement’ for further discussion, they did not rule out enhancement applications altogether, but cited “public discomfort” and the need for “public discussion” before any further steps in this direction, concluding that “genome editing for purposes other than treatment or prevention of disease and disability should not proceed at this time” (ibid., 7).
The Nuffield Report’s refusal to endorse a categorical distinction between therapy and enhancement constitutes a practical recognition that a mantra of “therapy yes, enhancement no” will be of little use when the definitions of therapy and enhancement themselves are and will remain contested. While we might be able to point out ends of the spectrum that would be deemed ‘clearly therapy’ or ‘clearly enhancement’ as a matter of common sense, questions are likely first to arise over the grey area (the “liminal space”, we might say) of technological interventions and their intended purposes. The Council’s position thus permits the application of meaningful evaluative criteria in relation to potential uses of genome editing, rather than relying on problematic semantic categorisations to draw artificial hard lines around what is or is not permitted.
Finally, and as expected, the Nuffield Report reiterated the need for “broad and inclusive societal debate” (Nuffield Council, xviii). The need for public engagement on this topic has been a distinctive feature of other policy statements on genome editing, including the aforementioned US Academies’ report and the Hinxton Group Consensus Statement. While important questions remain to be answered about the forms and scope that such engagement should take, the Council’s recommendation that this debate should precede any moves towards potential policy change is unarguable.
In the face of these measured but important contributions, the response of the majority of mainstream media to the Council’s findings was all the more disappointing. With a few commendable exceptions, the papers overwhelmingly resorted to tabloid-style headlines about how ‘designer babies’ would soon be on the way, rather than focusing on the important principles of welfare and social justice that the report identifies. Traducing the report’s conclusion that “none of the considerations raised yields an ethical principle that would constitute a categorical reason to prohibit heritable genome editing interventions” (ibid.) as a “green light for designer babies” might be characterised as over-simplification at best; at worst, a shallow, misleading and disingenuous attempt at sensationalist copy-selling.
The response from those opposed to heritable genetic modification was likewise disappointing, if predictable: disappointing not in the fact of its opposition per se (opinions and reasons, after all, may differ) but the way in which this opposition was framed and grounded. 
For example, Marcy Darnovsky, of the US Center for Genetics and Society, dismisses the report’s 183 pages of thoughtful, wide-ranging consideration as “bioethics-lite” ‘tick-boxing’. She frames one of the strengths of the Council’s approach – avoiding categorical statements of what is ‘right’ or ‘wrong’ and instead choosing to open up discussion about what actually matters – as a weakness, and claims that “it seems strange for supporters of heritable genetic modification” to acknowledge the technology’s potential to exacerbate inequities. It only seems strange, though, if head-in-the-sand bioethics that refuses to engage with real concerns is what we are looking for! The ‘ostrich approach’ is not what we ought to expect from the Nuffield Council, nor is it what they gave us. If this has confounded Darnovsky’s expectations, so much the better.
David King, director of the UK’s Human Genetics Alert and another vociferous opponent, also resorts to invoking the ‘designer babies’ trope, before attempting to tell “the people of Britain” what they want: “The Nuffield Council doesn't even bother to say no to outright designer babies. The people of Britain decided 15 years ago that they don’t want GM food. Do you suppose they want GM babies?”
Collapsing all possible uses and motivations for using genome editing into the catchphrase ‘designer babies’ is a singularly unhelpful contribution to the debate.  In setting out to evoke a kneejerk reaction via politically-loaded language, it aims to reduce the debate to a bombastic lowest common denominator: what we might call the bioethical equivalent of mudslinging. It also, crucially, forecloses the possibility of any further discussion over what sorts of uses of genome editing might meet the morally important criteria of improving individual welfare and promoting equitable social benefit. In light of the lengths to which the Nuffield report goes to consider these highly significant issues, as well as the widespread commitment to dialogue and engagement that was reiterated in the report, this approach is worse than recalcitrant. 
In other words, if one didn’t want to have a reasoned, nuanced and inclusive discussion, then this would be exactly the way to go about not having it. Indeed, if we take seriously not just the stated need for public engagement in shaping the governance of genome editing, but the moral and political justifications for why this engagement is ethically required, we might go so far as to say this strategy for intervening in the debate is itself unethical, in that it is more likely than not to stifle meaningful discussion. 
Publics are neither ignorant nor stupid. Recent experience with the public dialogue on genetic technologies conducted by the Royal Society, for example, has demonstrated amply the ability of publics to engage in a thoughtful and sophisticated way with the complex ethical issues raised by contemporary genomics and genome editing. A common refrain in relation to genome editing is that bioethics has been grappling with the issues around heritable genetic modification for over 40 years, since the era of recombinant DNA and Asilomar. The kinds of discussions that are occurring in contemporary engagement forums illustrate that publics have not been inert for those four decades; instead they have been robustly and alertly considering, weighing and responding to the ongoing development of scientific and ethical scholarship during that time.
Given this, the heavy-handed insistence by some on rewinding to old and hackneyed tropes in the current discussion shows what I can only class as a basic lack of respect for the many and diverse publics, not just of Britain but globally. It is an attempt to railroad people into a certain narrow account of what they should think, rather than giving them opportunities to think for themselves – or indeed express the thinking that they have already been doing on this subject. 
Moreover, in invoking science-fiction imaginaries as the starting point for debate, it goes against the Nuffield Council’s very sensible position of “start with reality”. The reality with which we should start is that we face exciting but still emerging scientific possibilities, and we as publics are being encouraged to discuss them widely, consider different perspectives, and engage in the collective endeavour of public bioethical discourse. This will be very far from an easy, ‘bioethics-lite’ process: we will need to attend to questions of how and where such discussions take place, not only within the UK but globally; who sets the terms for engagement; how to be appropriately inclusive; and what we do with the results of this. 
All of this will require us to work together with openness and respect to develop robust, socially and ethically responsible processes for moving from engagement to governance. Shouting about ‘designer babies’, though, is not the way to achieve it.

Sarah Chan is Director of the Mason Institute for Medicine, Life Sciences and the Law; Chancellor's Fellow in the Usher Institute for Population Health Sciences, University of Edinburgh; and Co-Principal Investigator on the Wellcome Trust-funded Centre for Biomedicine, Self and Society

Acknowledgments: The thoughts that have contributed to the writing of this post were shaped, amongst other things, by my participation in a workshop on genome editing (16-18 July) hosted by the Centre for Social Ethics and Policy at the University of Manchester (with colleagues including Annie Austin, Iain Brassington, Sarah Devaney, Simona Giordano, John Harris, Søren Holm and Alex Mullock), together with colleagues from the Centre for Biomedical Ethics at the National University of Singapore (Markus Labude, Tamra Lysaght, Owen Schaefer, Vicki Xafis), as well as Silvia Camporesi (Department of Global Health and Social Medicine, King's College London) and Catherine Mills (Monash Bioethics Centre, Monash University). I would also like to thank my Mason Institute colleagues, particularly Agomoni Ganguli-Mitra, for helpful comments on the draft text.

National Academies of Sciences, Engineering, and Medicine. (2017). Human Genome Editing: Science, Ethics, and Governance. Washington, DC: The National Academies Press. doi: 10.17226/24623.
Nuffield Council on Bioethics. (2018). Genome editing and human reproduction: social and ethical issues. London, UK: Nuffield Council on Bioethics. (http://nuffieldbioethics.org/wp-content/uploads/Genome-editing-and-human-reproduction-FINAL-website.pdf)

1 comment:

  1. Well, Sarah, you've really outdone yourself here.

    1. You seem to think that I'm trying to shut down debate, but in fact that's precisely what I get from your piece. But you do it in a particular, socially approved of, and, frankly completely dishonest, academic way.

    At least I don't consciously and knowingly manipulate the truth, as any number of the promoters of this report, including members of the panel that produced it have done over the last few days. All these commentators have repeatedly insisted when speaking to the media that we need this technology to prevent the birth of children with genetic disorders. Which they know perfectly well is not true, because we have genetic selection techniques. But that framing is vital to these repeated campaigns of propaganda in favour of every new reprogenetics technique: the scientists want to prevent suffering and the critics must be some kind of religious maniacs or people who want children to suffer. And that is the least of their manipulations, they repeatedly misinform the public about basic scientific matters e.g. mitochondria as 'just batteries'. As a former scientist I am frankly horrified by these betrayals of the scientific ethic. If you want to talk about respect for publics, I suggest you start by looking at these propaganda manipulation campaigns.

    2. The term designer babies is a very good example of a popular term that hits the nail right on the head, which is why people keep on using it. It's not an 'old and hackneyed trope'. I am surprised to have to explain this to you. The point of the term is that it critiques the neoliberal/consumerist element of a market in enhanced children, the element of picking a child's characteristics the way we pick jeans, according to the famous name designer. What that does is break the very fundamental ethical rule that children are people, not commodities to be bespoke designed. The phrase captures those concerns in a very punchy way, which is why it has stuck. Deal with it.

    3. I have had this same kind of comment before when I use the term eugenics, which after all is a established term, which might be criticised more of being something that ordinary people would not recognise. People say I'm being emotional or trying to make other people be emotional. Well, I plead guilty, although I am a scientist and am often criticised by my campaigning colleagues for being too dry, on this issue I freely admit that I have strong feelings about it. When you are part of two of the groups targeted for destruction in the early 20th century wave of eugenics (disabled and Jewish), you do tend to have feelings about eugenics.

    But, in any case, I don't think it's an academically sustainable position these days that human cognition is a purely 'rational', 'unemotional' affair. We all do it, some of us admit it.

    4. But really, I don't think that's your real problem with my style. Really, I think the problem is that I am frankly and openly political, and that is the one thing that is simply not allowed in the groves of academe these days. And even more, it is totally prohibited by the rules of the bioethics discourse.

    Ah, wait a minute, no that's wrong. Of course, you are in fact being totally political. Because, as any three-year-old knows, if you refuse to take sides between the oppressors and the oppressed, you've taken sides with the oppressors. That's what really stinks about this blog.

    It's also completely dishonest, because nowhere in this do you admit that, far from being some kind of neutral, only interested in the quality of the debate, you are in fact more or less a trans-humanist. So, you criticise the critics of human genetic engineering, but don't admit your own position.

    So, what I would suggest is that you actually say what you think about this issue. Then we can have a discussion. But don't give me this snarky crap about how I'm emotionally manipulating everybody.