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Germline in the sand: where should we draw the boundaries for genome editing?

15 April 2019
Appeared in BioNews 995

Genome editing was the focus of the Progress Educational Trust (PET)'s 'Germline in the Sand: Where Should We Draw the Boundaries for Genome Editing?' event, held at the Royal College of Physicians of Edinburgh on 19 March 2019. The discussion, which was supported by the Scottish Government, sought to explore the scientific and ethical boundaries of genome editing and what place this technology should have within our society.

The event was chaired by PET's communication manager Sandy Starr, who introduced the proceedings with an explanation of the difference between somatic and germline genome editing, and an overview of the legal situation in the UK. Somatic genome editing in humans (where changes to the genome will not be inherited by a subsequent generation) is legally permissible in treatment contexts in the UK, whereas germline genome editing (where changes to the genome could be inherited by a subsequent generation) is not.

The first speaker was Professor Bruce Whitelaw, professor of animal biotechnology and deputy director at the University of Edinburgh's Roslin Institute. Professor Whitelaw uses genome editing in his research, which is on livestock, and explained how it takes selective breeding practices established over hundreds of years and removes the need to wait for a mutation to occur randomly. He gave an example from his own work of creating pigs which are resistant to a virus called PRRS, which causes animal suffering and financial losses to farmers.

Professor Whitelaw told the audience that 'from a technology perspective, everything we do in animals we can do in humans'. But he was clear to draw an ethical distinction, explaining that we view animal lives very differently from human lives, and that just because we can do something it does not follow automatically that we should. However, referring to Dr He Jiankui's controversial work (see BioNews 977), he said: 'The genie is out of the bottle – we can't put those girls back.'

The second speaker, Dr Gillan Wright, had previously been a researcher in respiratory medicine and registrar in palliative medicine. She is currently a senior researcher at the Scottish Council on Human Bioethics, and she began by praising the potential of genome editing while warning that most powerful tools can harm as well as help. 'There's nothing intrinsically wrong with a tool – it's how and when it should be used'.

Dr Wright talked about the risks of the technology, such as off-target effects and unintended downstream effects. But overall she took a nuanced approach, accepting that risk is inherent in almost everything and asking 'What is an acceptable level of risk?'.

Quoting Orwell – 'all animals are equal, but some are more equal than others' – Dr Wright also discussed possible negative consequences of genome editing for society, outlining concerns around social justice, discrimination and equality. She expressed particular concern that irresponsible use of genome editing could reflect negatively on non-germline research, thereby threatening the development of somatic therapies.

The third speaker was clinical geneticist Neva Haites, emeritus professor of medical genetics at the University of Aberdeen. She spoke about the findings of the Nuffield Council on Bioethics' recent report 'Genome Editing and Human Reproduction: Social and Ethical Issues' (see BioNews 959), having been part of the multidisciplinary working party that produced the report.

The report concludes that germline genome editing could be permissible in certain circumstances, if requirements including safety and responsible governance are met. It also lays down two key principles: such genome editing interventions must be intended to secure the wellbeing of the relevant person (and their descendants), and there must be regard for 'social justice and solidarity' (meaning that the intervention should not widen social inequality, or marginalise or disadvantage people).

Dr Calum MacKellar, director of research at the Scottish Council on Human Bioethics, structured his talk around a quote from the 2017 report 'Human Genome Editing: Science, Ethics, and Governance' by the USA's National Academies of Sciences and Medicine: 'Unconditional love... and respect for all people who are born with... disabilities are not incompatible with intervening to avert... disability prior to... conception.'

Dr MacKellar disagreed with this statement, saying that disorders must be embodied in persons – the disorders do not exist outside human bodies, and cannot be considered separately from the people they affect. For Dr MacKellar, a line must be drawn between treating disability in an existing person and preventing people with certain disabilities from coming into existence.

The final speaker was Dr Sarah Chan, principal investigator at the University of Edinburgh's Centre for Biomedicine, Self and Society. She opened by saying that the meaning of the question 'Where should we draw the line?' is itself open to discussion, and that the question should not necessarily deter us from setting out on a particular path. She criticised 'slippery slope' arguments: 'Just because we can't draw a bright line doesn't mean there aren't valid moral distinctions to be made.'

Dr Chan argued that the germline is not necessarily the best place to draw the line, and that arguments about preserving the 'purity' of the germline stem from harmful genetic reductionism. 'We are far more than our genes, and I think it is an affront to human dignity to suggest that simply manipulating the human germline could take away what makes us special as persons.'

In PET tradition, much of the event was dedicated to fielding questions and comments from the audience.

The first audience question concerned the panel's attitude to so-called 'saviour siblings'. Professor Haites recounted her experience as a member of the HFEA, when that regulator first considered the granting of a licence for the creation of such siblings. Professor Haites recalled concerns that granting the licence would undervalue the child created as a tissue match to the existing sibling. However, following the impact on public opinion of a BBC documentary on the matter, the relevant HFEA licensing panel decided to grant the licence.

In response to an audience question about the ethics of (hypothetically) editing the genomes of children so as to make these children resistant to malaria, Professor Whitelaw said that such questions illuminate how we decide where to draw a line. It could be difficult to reach a consensus, when different people might rank or prioritise illnesses in many different ways.

However, Dr Chan's answer was more direct: 'I could do something which would save millions of lives. If I fail to do it they will die. The question should be, how much of an obligation do I have to do it? (All other things being equal, which they often are not.)'

An audience member asked about human dignity, which comes up often in discussion of this area, and asked what human dignity actually is. Perhaps, they suggested, the concept is a placeholder for something which eludes definition.

Dr McKellar answered that inherent human dignity, as enshrined in the Universal Declaration of Human Rights, is linked to the idea that in some crucial sense we are all equal – even though we may not be equal in terms of biology, opportunity or wealth. Dr Whitelaw added that the twins created by Dr He have as much inherent human dignity or worth as everyone else.

Two questions – one about a recently proposed global moratorium (see BioNews 991) on germline genome editing, and one about biohacking – gave rise to an interesting discussion.

Dr MacKellar admitted that he would prefer an outright ban on germline genome editing, in line with certain Council of Europe recommendations, rather than a moratorium. However, he also pointed out that these same recommendations are lenient in scenarios where the germline is altered inadvertently during the course of medical treatment, and he said that leniency is acceptable in such a context.

Dr Whitelaw said that recent examples of biohacking demonstrate that human genome editing is here, whether we like it or not. Prohibition will simply drive it underground.

PET is grateful to the Scottish Government for supporting this event.

PET's next public event will be 'Testing Times: How Should We Use Genomic Data in Assisted Reproduction?', taking place in London on Thursday 16 May. See details of the speakers here and register for free here.

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