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Event Review: The Gene Gap – Who would you trust to edit the human race?

17 February 2020
Appeared in BioNews 1035

The Guardian Live's event entitled 'The Gene Gap: Who would you trust to edit the human race?', took place on 28 January 2020 at SamsungKX, London. The event brought together three experts in germline genome editing: Dr Peter Mills, assistant director of the Nuffield Council on Bioethics, Dr Helen O'Neill, molecular geneticist at University College London, and Dr Güneş Taylor, molecular developmental biologist at the Francis Crick Institute. The event was chaired by Alok Jha, science and technology correspondent at The Economist.

The Guardian's project 'The Gene Gap', supported by the The Wellcome Trust, London and Involve, London, aims to improve 'audience-centred journalism' to identify different perspectives about the new emerging technology of germline genome editing. The Gene Gap project ran workshops with different groups of people across the country to gather various perspectives and attitudes on genome editing; from parents of children with special educational needs, members of the farming community, and a BAME group. Snippets of the workshop conversations were used during this Guardian Live event, and full podcasts and articles will be available on the Guardian website soon.

The event put forward three main questions: What defines us as humans? Who do we trust to control these technologies? And who will benefit from these technologies? The audience was composed of doctors, researchers, students, lay-audience members and participants from The Gene Gap project.

To open the session Jha asked the experts to define genome editing in 20 seconds. Dr O'Neill explained the mechanisms of the technology and how technology such as CRISPR/Cas9 allows us to make targeted breaks into DNA to add or remove genes. Dr Mills gave a succinct definition of genome editing as 'deliberate targeted modification of DNA in a cell'. Dr Taylor described how revolutionary the new advances in genome editing are, and how the technology that now allows us to make DNA modifications is the 'iPhone of the mobile phone revolution'.

Jha then moved on and asked about the potential of the technology for healthcare, and what is it that truly makes a human a human.

Dr O'Neill emphasised that genome editing will be transformative for modern medicine in the treatment and prevention of disease with Dr Taylor adding that it will also be an incredible tool for better research and drug design. This technology finally gives scientists and researchers the tools to carry out experiments and research, which they have been hoping to do for years, in a quicker, cheaper and more accurate way.

Jha then asked about the promising trials currently taking place in patients with sickle cell anaemia and queried how complicated it would be to get germline genome editing from laboratory research to clinical use in patients. At this point the panel described the difference between treating actual people and those who don't yet exist. They explained the difference between somatic (non-permanent and non-heritable changes made in specialised cells) and germline editing (permanent, heritable genetic modifications made in embryos, sperm or egg). Concerns of possible risks from using the technology and its accuracy, such as off-target effects, were then briefly addressed.

Jha followed on by questioning whether these technologies could be used to make us taller or more attractive, for example. The experts discussed that these traits are very complex as they are a result of multiple genes (multifactorial/polygenic) and emphasised that it is unlawful in the UK to select embryos for such reasons. Dr Mills emphasised that the problem is preventing regulatory havens from emerging outside of the UK where genome editing technologies can be used for non-disease genes. Dr Taylor pointed out that healthcare tourism is already a problem, with prospective parents travelling to the USA, where there are more liberal regulations, for pre-implantation genetic diagnosis.

Questions from the audience focused on research showing that having one gene for sickle cell anaemia confers resistance to malaria, and an audience member suggested that maybe we do not know enough about the relationship between genes and the environment.

This section seemed to fall short of addressing the question of what it is to be human it set out to answer, but instead served as an introduction about possible uses, pros and cons of the technology.

The talk then moved onto the second question: who do we trust to decide what we can do with this technology? An audio clip from the workshops raised concerns about past unethical medical experiments that could now occur again with genome editing, apprehension about the role of politics in regulation of medical technology, and how the expertise of parents with children with genetic diseases should be used when moving forwards with regulation.

All of the experts agreed that when the step is made from pre-clinical research to human clinical trials there are many questions that need answering. The panel debated the importance of expert and non-expert opinions and how we will answer questions that are technical, and those which are of policy.

Jha questioned whether scientific and policy communities are involving the general public enough. The panel pointed out that those who want to listen are willing to engage, but there are many people who are not interested, and it is very challenging to get them involved. The panel praised the Guardian's Gene gap project and used it as an example of the important outreach that should be taking place.

The final section of the talk was on who exactly would benefit from the technology. Participants from the workshops were apprehensive about issues of justice and access, and fear that genome editing would focus exclusively on curing big diseases meaning that rare diseases would remain untreated. Dr O'Neil doubted that it would fuel inequality as one of the main benefits of the technology is that it is remarkably cheap, so should lead to quicker and better treatment for more people. Dr Mills added to this that the number of experiments and papers being published using the technology all over the world demonstrates precisely how accessible it is. What would really drive treatment, said Dr Taylor, was society deciding what it wanted to fund.

The floor was then opened for questions with queries about patenting, the fear of untrustworthy people in charge, and the shadow that eugenics may cast on using this technology. One audience member asked how much we really know, to which Dr O'Neill answered that what we know currently is only a drop in the ocean.

The talk would have benefited from a clearer introduction at the beginning explaining the technology, the law and key scientific terms. However, the event was a promising start to the Guardian's work, with engaging and thought-provoking discussion occurring on the panel. The event asked incredibly complicated questions which reports, conferences and academics have not yet been able to answer, but this will further encourage much needed thoughtful discussion with wider participation of the public.

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