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Genome editing and human reproduction: The Nuffield Council on Bioethics' report

23 July 2018
Appeared in BioNews 959

Judging from the coverage of the latest Nuffield Council on Bioethics report, 'Genome Editing and Human Reproduction: Social and ethical issues', the subject of altering genetic inheritance in humans has become no less incandescent in recent years. This is despite the renewed discussion it has received following the emergence of new genome editing techniques – especially the CRISPR/Cas9 system – after 2012. A number of commentators have even expressed outrage that the subject should be raised anew, claiming that it has long been settled by international consensus. 

The council does not believe that this is the case. Nor are the questions the same ones that resulted in the solemn declarations that followed the appearance of recombinant DNA technologies in the 1970s.

Two things in particular have changed. First, the expansion of genomic information in biomedical research has resulted in new scientific understanding of the effect of genomic variation in humans. At the same time, the expansion of direct-to-consumer and clinical genetic testing has made genotype information increasingly accessible to individuals. This means that prospective parents may approach reproduction with more information than ever about some likely characteristics of their children, particularly their likelihood of heritable disease. 

Second, the options available for acting on this knowledge have expanded as assisted reproductive technologies have developed. Increasingly, then, prospective parents find themselves knowing things that previous generations could not have known and having options to act on this knowledge that previous generations did not have. Genome editing represents a potentially powerful addition to these options. 

Of course, it is possible to decline available knowledge and to refuse the opportunity to use assisted reproductive technologies. The catch is that to take this route could itself become an inescapable moral choice in some contexts. 

We may want to say that prospective parents are responsible for their choices, and science and society are responsible for their options. But the picture is more complicated than that. Individual decisions and the available options are dynamically interrelated.  This is the problem that the council's report seeks to address: as the choices and options available to prospective parents change, where can we collectively make the moral choices that will shape the future for all?

I am not going to summarise the report here, as the report contains its own summary and a 13-page guide to the report is also available. Instead, since reading the full report requires a little time, I will suggest why it might repay this investment by pointing to some ways in which the report differs from many of the others that have gone before it. 

As trailed in the council's 2016 report, 'Genome editing: An ethical review', which surveyed a range of potential applications of genome editing technologies, the new report does not begin with a scientific discovery or technical development. It begins, instead, with a societal challenge that technologies might help to address. 

In this case, the challenge is overcoming some of the things we take as given when it comes to genetic inheritance. The most salient and potentially tractable of these are the genetic variants that lead to predictable inherited disease, although the cases in which genome editing would be the only way of doing this are very rare. The report also asks another equally important question, however. If or when we do have safe, effective genome editing technologies, what other uses might we find for them? 

This question achieves two things. First, it sets genome editing alongside supposedly alternative approaches to overcoming the givens of genetic inheritance, such as gamete donation or preimplantation genetic diagnosis. Second, it sees the supposedly most immediate uses of the technique as potential precursors to a wider range of applications. This situates the council's inquiry as addressing a problem of public morality requiring collective moral reasoning rather than as an attempt to bring specific cases directly under ambiguous abstract principles. 

Unlike many other reports, the council's inquiry is not posed in an implicitly medical frame (which only asks: 'How can we offer these treatments ethically?'). Instead, it takes a critical moral frame (which begins by asking: 'What is at stake, ethically, in offering treatments?'). It is, regrettably, very easy to misunderstand the purpose of this. Having healthy, genetically related children is important but it is not the same as treating someone who has a disease. It is more complex because multiple interests are engaged in complex ways. 

These interests can easily become obscured if the question is just about 'ethical service provision' which focuses mainly on the interests of the people treated'. This does not mean that having children has to be given some kind of moral justification; it is about understanding the kind of moral significance that different reproductive aims actually have. Though the desire to have children may be ultimately beyond rationalisation, the choice of methods is becoming increasingly a matter of deliberation. 

Despite the focus on heritable genome editing, the council's inquiry is not narrowed around a particular 'permission' question ('Should we allow X?'). It broadens the discussion to consider alternative outcomes. Nor does it hold that the justification for permitting heritable genome editing in any given case is given by the clinical description of the condition to be avoided (or secured). It acknowledges that this depends also on the medical, social and governance context as well. 

The broader consideration can be undertaken soberly and circumspectly while a technology is still in the pipeline. It is very difficult to do so when the technology is ready for use, when prospective users are appealing for help and nuanced positions are cast as black and white in newsprint. A consistent message of the report is that public debate is not only an instrument to inform policy decisions. It is an indispensable way of society continually articulating and critiquing the public interest, a surfacing of complex, interrelated moral norms and values. 

Unlike many others, the Nuffield report's concern is not to carve out a protected space for biomedical research by segregating it from too-difficult questions of future clinical use. To do this risks delaying engagement with important social and ethical questions to a point at which approval of the technique could become a fait accompli. Instead, the aim is to foresee responsible pathways for translation so that, should heritable genome editing interventions become feasible one day, there is a better chance of securing morally desirable futures and avoiding undesirable ones.

The report took some time to produce (20 months of difficult deliberation). There is a lot more that could be said about it, for instance about how it arrives at the two guiding principles and 15 recommendations it proposes. There is much more than the recent headlines would suggest. But it is certainly not the final word. 

Genome editing and human reproduction: social and ethical issues
Nuffield Council on Bioethics |  17 July 2018
20 August 2018 - by Professor Robin Lovell-Badge 
The recent Nuffield Council on Bioethics report 'Genome Editing and Human Reproduction: Social and Ethical Issues' has been both welcomed and criticised...
13 August 2018 - by Dr Alexander Ware 
Controversy surrounding last year's report of a disease-gene being edited out of human embryos continues with a fresh round of evidence...
30 July 2018 - by Dr Rachel Huddart 
Almost three-quarters of Americans support the use of genome editing to treat serious genetic conditions in babies, a survey has found...
17 July 2018 - by Dr Alexander Ware 
In a new report, the UK's Nuffield Council on Bioethics has concluded that the use of heritable genome editing 'could be ethically acceptable in some circumstances'...
31 October 2016 - by Jen Willows 
The Nuffield Council on Bioethics presented its preliminary report 'Genome editing: an ethical review' in the genteel surroundings of the Royal Geographical Society in South Kensington...
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