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As a Christian who has worked in the field of genetics and human health and has an interest in how genetic advances are radically changing everyday life, I was excited to participate in the Third International Summit on Human Genome Editing held in early March this year .
The meeting focused on two broad applications of the technology. The first involves somatic cells, meaning any cell in the body other than the reproductive (or germline) cells. The purpose is to correct faulty genes to prevent or treat disease. The second involves germline cells (sperm or egg) or cells of the very early embryo. This could potentially prevent transfer of a genetic disorder from parent to child but also raises the spectre of “Designer Babies”, editing genes to parental order. With the second type of editing alterations may be passed on through the generations whereas that is not the case with somatic genome editing.
The previous Summit, held in Hong Kong in 2018, was dominated by an announcement from Dr He Jianku of Shenzhen, China that he had edited the genomes of two human embryos, leading to the birth of babies Lulu and Nana. These two little girls became the first people in the world to have their genomes deliberately designed by another human being. Dr He’s actions caused a furore. There were calls for a moratorium on the technology; frequent warnings about human beings “playing God”; and Dr He reflecting on his actions during a three year jail sentence. Safety was the main focus of expressed concerns; both for the children and for humanity, given the potential for uncharacterised genetic alterations to enter the human gene pool. There was notably less focus on other concerns such as exertion of control of one person over another or commodification of the child, for example. (Commodification: treating a person as an object or commodity)
With this controversial background in mind, the opening of the London Summit made reference to the 2018 announcement but everyone seemed keen to move on to consider somatic genome editing as a new, exciting therapeutic avenue. There were updates on methods, noting the original approach (CRISPR-Cas9 editing) may be improved by newer techniques (base, prime or epigenetic editing), promising more precision. There were also reports of ongoing clinical trials. Much remains to be learned about potential longer-term effects, for example of “off-target” edits or unanticipated consequences when edited genes have more than one function. Nevertheless, the general tone was upbeat, suggesting the technology will find its place as part of therapeutic medicine.
The poster child of the Summit was certainly sickle cell disease (SCD). Victoria Gray spoke as the first person to be successfully treated by gene editing for this painful condition. The example of SCD was used to support calls for equitable access to this expensive new generation of gene therapies; the condition is most common in Africa where health infrastructure and funding are limited. However, it is difficult to imagine gene editing escaping global inequities in healthcare when even effective and inexpensive interventions like vaccines (e.g. Covid-19) do not reach the most vulnerable. There are also difficult choices to be made when simpler approaches to combat childhood SCD mortality are available, along with cost-effective interventions on other major killers including pneumonia, diarrhoea and malaria.
As to germline genome editing there was an interesting dichotomy. There was unanimity that creating babies by genome editing was not safe or effective, nor had there been sufficient societal and policy debate to move forward. Conversely, there was support for basic research into embryo genome editing, notably to study early human development. I anticipate the latter support will coalesce with new guidelines from the International Society for Stem Cell Research (ISSCR) to press for relaxation of the current 14-day limit on experimentation on human embryos. Watch this space!
There were a number of valuable interventions from civil society organisations, helpfully pointing to ethical principles, societal beliefs as well as policy, guidelines and regulation. After all, genetic technology has the power to change humanity irreversibly. I was struck, however, by the absence of theologians or anyone else explicitly representing a faith perspective among the speakers. The Christian faith, whose adherents make up around 30% of the world population, was not formally represented. Does this signal a lack of engagement from the Church community? Do we need a theology of genetics? Values must precede technology, not trail in its wake. In my view the Church must speak with a strong voice as genetic advances are evaluated. We have much to contribute and shouldn’t leave it to others to decide our future.
 The meeting took place from the 6-8 March 2023 at the Francis Crick Institute in London, organised jointly by the Royal Society, the UK Academy of Medical Sciences, the US National Academies of Sciences and Medicine and The World Academy of Sciences. Full information can be found at: https://royalsociety.org/science-events-and-lectures/2023/03/2023-human-genome-editing-summit/
Chris obtained his PhD in oncology in 1984 from Manchester University for his work on monoclonal antibodies to study DNA damage and repair. He was awarded a post-doctoral fellowship at the International Agency for Research on Cancer (IARC), WHO in Lyon, France and a further fellowship, from the Royal Society to work at the Netherlands Cancer Institute in Amsterdam.
He was appointed to the Chair of Molecular Epidemiology at the University of Leeds in 1996, later becoming Head of the Centre for Epidemiology and Biostatistics and Director of the Leeds Institute of Genetics, Health and Therapeutics. He was also a founding member of the Ethics and Governance Council of UK Biobank. Chris was elected Director of IARC from 1st January 2009 and served a maximum two five-year terms of office, leading the organisation in a mission of “cancer research for cancer prevention”. Upon leaving IARC he was awarded the IARC Medal of Honour and the title Emeritus Director.
He established the concept of the “exposome” to complement the genome, an initiative which has led to a new field of exposome research. He is currently finalising a book on evaluating genetic advances within a Christian framework.