Explainer
Biology
Culture
Ethics
9 min read

Ethics needs to catch-up with genetic innovation

Are we morally obliged to genetically edit?

John is Professor Emeritus of Cell and Molecular Biology at the University of Exeter.

An artistic visualisation of a DNA strand growing flowers from it.
Artist Nidia Dias visualises how AI could assist genomic studies.
Google Deepmind via Unsplash.

It makes me feel very old when I realise that Louise Brown, the first baby to be born via in vitro fertilisation (IVF), will be 47 years old on July 25th this year. Since her birth in 1978, over 10 million IVF-conceived babies have been born worldwide, of whom about 400,000 have been in the UK. Over that period, success rates have increased such that in some clinics, about 50 per cent of IVF cycles lead to a live birth. At the same time, there have also been significant advances in genetics, genomics and stem cell biology all of which, in relation to human embryos, raise interesting and sometimes challenging ethical issues. 

I start with a question: what is the ‘moral status’ of the early human embryo? Whether the embryo arises by normal fertilisation after sexual intercourse or by IVF, there is a phase of a few days during which the embryo is undergoing the earliest stages of development but has not yet implanted into the wall of the uterus; the prospective mother is not yet pregnant. In UK law, based on the Human Fertilisation and Embryology Act (1990), these early embryos are not regarded as human persons but nevertheless should be treated with some respect. Nevertheless, there are some who oppose this view and believe that from the ‘moment of conception’ (there actually isn’t such a thing – fertilisation takes several hours) embryos should be treated as persons. In ‘conventional’ IVF this debate is especially relevant to the spare embryos that are generated during each IVF cycle and which are stored, deep-frozen, in increasing numbers for possible use in the future.  

A further dimension was added to this area of debate when it became possible to test IVF embryos for the presence of genetic mutations that cause disease. This process is called pre-implantation genetic diagnosis and enables prospective parents who are at known risk of passing on a deleterious mutation to avoid having a child who possesses that mutation. But what about the embryos that are rejected? They are usually discarded or destroyed but some are used in research. However, those who hold a very conservative view of the status of the early embryo will ask what right we have to discard/destroy an embryo because it has the ‘wrong genes’. And even for the many who hold a less conservative view, there are still several questions which remain, including ‘which genetic variants we should be allowed to select against?; should we allow positive selection for genes known to promote health in some way?’; should we allow selection for non-therapeutic reasons, for example, sporting prowess?’ These questions will not go away and there are already indications that non-therapeutic selection is being offered in a small number of countries. 

Genetic modification 

This leads us on to think about altering human genes. Initially, the issue was genetic modification (GM) which in general involves adding genes. GM techniques have been used very successfully in curing several conditions, including congenital severe immune deficiency and as part of treatment programmes for certain very difficult childhood cancers. One key feature of these examples is that the genetic change is not passed on to the next generation – it just involves the body of someone who has already been born. Thus, we call them somatic genetic changes (from the Greek, sōmatikos, meaning ‘of the body’).  

Genetic modification which is passed on to the next generation is called germline GM which means that the genetic change must get into the ‘germ cells’, i.e., the sperm or egg. Currently, the only feasible way of doing this is to carry out the genetic modification on the very early embryo. At present however, with just one very specific exception, GM of human embryos is forbidden in all the countries where it would be possible to do it. There is firstly the question of deciding whether it is right to change the genetic makeup of a future human being in such a way that the change is passed to succeeding generations. Secondly, there are concerns about the long-term safety of the procedure. Although it would involve adding specific genes with known effects, the complexity of genetic regulation and gene interactions during human development means that scientist are concerned about the risks of unforeseen effects. And thirdly, germline GM emphasises dramatically the possibility of using GM for enhancement rather than for medical reasons.  

Genome editing 

This leads us to think about genome editing. In 2011, it was shown that a bacterial system which edits the genomes of invading viruses could also work in other organisms This opened up a large array of applications in research, agriculture and medicine. However, the ethical issues raised by genome editing are, in essence, the same as raised by GM and so there is still a universal prohibition of using the technique with human embryos: germline genome editing is forbidden. Despite this, a Chinese medical scientist, He Jiankui, announced in 2018 that he had edited the genomes of several embryos, making them resistant to HIV; two babies with edited genomes had already been born while several more were on the way. The announcement caused outrage across the world, including in China itself. He Jiankui was removed from his job and then, after a trial, was imprisoned for three years; his two colleagues who collaborated in this work received shorter sentences. 

At present the universal prohibition of human germline genome editing remains in place. However, the discussion has been re-opened in a paper by an Anglo-Australian group.  They suggest that we need to develop heritable (i.e. germline) polygenic genome editing in order to reduce significantly an individual's risk of developing degenerative diseases. These includecoronary artery disease, Alzheimer’s disease, major depressive disorder, diabetes and schizophrenia. I note in passing that one of the authors is Julian Savulescu at Oxford who is already well-known for his view that parents who are able to do so, are ‘morally obliged’ to seek to have genetically enhanced children, whether by PGD, GM or genome editing. The use of polygenic editing, which would, in all likelihood, be available only to the (wealthy) few, fits in well with his overall ethical position. Needless to say, the paper, published in the prestigious journal Nature, attracted a lot of attention in the world of medical genetics. It was not however, universally welcomed – far from it. Another international group of medical scientists and ethicists has stated that ‘Human embryo editing against disease is unsafe and unproven …’ and even go as far as to suggest that the technology is ‘… going to be taken up by people who are pushing a eugenics agenda …’ remain very pertinent. 

Harder still and harder 

I have no doubt that amongst different reader there will be a range of opinions about the topics discussed so far. For anyone who is Christian (or indeed an adherent of almost any religious faith), one of the difficulties is that modern science, technology and medicine have thrown up ethical questions that could not have even been dreamed of by the writers of the Bible (or of other religious texts). We just have to use our wisdom, knowledge and general moral compass (and for some, prayer) to try to reach a decision. And if what I have already written makes that difficult, some recent developments multiply that difficulty still more.  

In the early years of this century, scientists developed methods of transforming a range of human cells into ‘pluripotent’ stem cells, i.e., cells capable of growing into a wide range of cell types. It also became possible to get both induced stem cells and natural stem cells to develop into functional differentiated cells corresponding to specific body tissues. This has huge potential for repairing damaged organs. However, other applications are potentially much more controversial. In 2023, Cambridge scientists reported that they had used stem cells to create synthetic mouse embryos which progressed at least as far as brain and heart formation within the normal pattern of mouse embryo development. 

At about the same time, the Cambridge group used individual human embryonic stem cells (from the blastocyst stage of embryonic development), to ‘grow’ early human embryos in the lab. There is no intention to use these embryos to start a pregnancy – indeed, it would be illegal to do so – but instead to study a period of embryo development which is not permitted with ‘real’ human embryos (research must not continue past 14 days of development). But how should we regard synthetic embryos? What is their moral status? For those who hold a conservative view of the normal human embryo (see earlier), should we regard these synthetic embryos as persons? Neither does the law help us. The legal frameworks covering in vitro fertilisation and early embryos (Human Fertilisation and Embryology Acts, 1990, 2008) do not cover artificial embryos – they were unknown at the times the legislation was drawn up. Indeed, synthetic embryos/embryo models are, in law, not actually embryos, however much they look like/behave like early embryos. Earlier this month, the Human Fertilisation and Embryology Authority (HFEA) discussed these developments with a view to recommending new legislation, but this will not dispel an unease felt by some people, including the science correspondent of The Daily Telegraph, who wrote that this research is irresponsible.  

But there is more. In addition to synthetic embryos, the HFEA also discussed, the possible use of gametes – eggs and sperm – grown from somatic stem cells (e.g., from skin) in the lab. Some authors have suggested that the production of gametes in vitro is the ‘Holy Grail’ of fertility research. I am not so sure about that but it is clear that a lot of effort is going into this research. Success so far is limited to the birth of several baby mice, ‘conceived’ via lab-grown eggs and normal sperm. Nevertheless, it is predicted that lab-grown human eggs and sperm will be available within a decade. Indeed, several clinicians have suggested that these ‘IVGs’ (in vitro gametes) seem destined to become “a routine part of clinical practice”.  

The lab-grown gametes would be used in otherwise normal IVF procedures, the only novelty being the ‘history’ of the eggs and/or sperm. Clinicians have suggested that this could help couples in which one or both were unable to produce the relevant gamete, but who still wanted to have children. In this application, the use of IVGs poses no new ethical questions although we may be concerned about the possibility of the gametes carrying new genetic mutations. However, some of the more wide-ranging scenarios do at the least make us to stop and think. For example, it would be possible for a same-sex couple to have a child with both of them being a genetic parent (obviously for males, this would also involve a surrogate mother). More extremely, a person could have a child of which he or she was actually, in strictly genetic terms, both the ‘father’ and the ‘mother’. What are we to make of this? Where are our limits?  

Dr Christopher Wild, former director of International Agency for Research on Cancer, explores in depth many of the developments and issue I outlined above. His article on why a theology of embryos is needed, is clear, well-written, helpful and thought-provoking. 

 

This article is based on a longer blog post with full footnotes.  

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Article
Books
Culture
Original sin
Trust
6 min read

When the penny drops, on the Salt Path or a London street

Being taken in unleashes dark, unpalatable emotions

Susan is a writer specialising in visual arts and contributes to Art Quarterly, The Tablet, Church Times and Discover Britain.

A painting show Adam and Eve wide-eyed after the fall.
Paradise Lost, Emil Nolde, 1921.
Nolde Foundation Seebüll.

Doubts about the honesty of The Salt Path, Raynor Winn’s memoir of walking the Southwest coastal path with her ill husband Moth, have raged in the past weeks. Investigations revealing the duo’s real names, financial history and the medical unlikelihood of the reversals in Moth’s degenerative condition, as presented in the book, provoked thousands of readers to express anger and disappointment at being duped. But being taken in and learning from it is part of being human: a lesson in how to trust more wisely, rather than not trusting at all 

Last summer I was scam mugged on my local high street. Passing a frail pensioner pulling loose notes from his pocket, I picked up his fallen tenners and returned them. Six steps later, a woman shrieking I’d thieved her “granddad’s” money grabbed my arm. Cue a few minutes of struggling and shouting, before I got away, bruised and humiliated, but still gripping my bag. Vowed afterwards to always walk on by if I saw someone needing help on London’s streets, as it could be a set up. 
But this detachment didn’t last. Being a goodish Samaritan is hardwired, even on the capital’s occasionally mean streets. We want to support and connect with our brothers and sisters. Withdrawal from our fellow citizens makes us more unsafe, not less. As Kaya Comer-Schwartz, London’s Deputy Mayor for Policing and Crime, said: “The safety of our town centres is more than just policing – it's about building stronger, more connected communities where everyone feels secure.” 

Certainly, a police officer would have been a welcome sight while tussling with my would-be conwoman. But I was grateful to the handful of people who stopped, as they would be my witnesses if the assailant went full mugger, in frustration that the ploy for me to open my bag had gone awry.  

Memoirs also entreat us to bear witness, explaining the betrayal felt by some of the Salt Path’s two million readers who invested emotion and empathy in its uplifting tale of a hard -done -by couple finding solace in nature. Identifying with the memoir’s midlife, everyman duo and believing a long trek through the Southwest is a silver bullet for homelessness, financial woes and degenerative medical conditions, does not make the Salt Path’s former fans saps, it makes them beautifully human.  

Raynor and Moth’s unmasking as Sally and, still remarkably healthy, Tim Walker, who lost their Welsh farmhouse following accusations of embezzlement against Sally and owned a property in France when claiming to be homeless, has lifted the lid on the publishing industry’s hunger for real life stories, with morally simple, feelgood narrative arcs. Bonus points if the tale includes a “nature cure”, where nature is not just a balm for grief and pain, but somehow vanquishes it altogether. Fact checking takes a lower priority than shaping a story into a series of emotional hot button scenes, with a neat, satisfying ending. And publishers may be guilty of their own sleight-of-hand by incentivising booksellers to personally recommend to customers a list of predetermined titles, creating the aura of ‘word of mouth’ hits. 

Mean Girls’ great line “Jealous much?” captures journalists’ enthusiasm, mine included, for the Salt Path scandal. How can bestseller success pass over writers with have spent decades crafting phrases like popular orange vegetable to avoid writing carrot twice, yet shine on Raynor/ Sally’s repetitive, clunky prose? ”We lost. Lost the case. Lost the house.” Her dizzying ascent from unknown debut non-fiction author, with only a piece in the Big Issue to her name, to a book deal with Penguin, seems to other writers a mystery as great as anything in her trekking tale. 

Feeling deceived unleashes these dark, unpalatable emotions such as envy and desire for revenge. I long nourished fantasies of catching the scammers in action and deflecting their next victim by shouting “Look! Granddad’s dropping his money again,” before handily nearby forces of law and order brought them to book. Even if you lose little materially from a con, the loss of dignity and sense of agency from becoming a mark, a manipulated, dehumanised bit player in another’s exploitive narrative, takes time to get over.  

Popular accounts of online romance fraud feel designed to give audiences a sense of superiority, ‘I’d see that coming a mile off’, over the victims, reinforcing their sense of shame. Yet evidently with many thousands being lured by romance fraud, the perpetrators use effective psychological coercion techniques. Omniscient superiority needs to be replaced with empathy and support for fleeced, broken-hearted victims. 

Grifters are part of life, but their reductive, empathy-free, world view does not have to be. As singer Nick Cave’s counsels, cynicism is not the answer: "Cynicism is not a neutral position — and although it asks almost nothing of us, it is highly infectious and unbelievably destructive. In my view, it is the most common and easy of evils.”  

Religious origin stories, including the Garden of Eden, contain an element of falling for a trick. Eve does the serpent’s bidding, and she and Adam are banished from paradise. “So he drove out the man; and he placed at the east of the garden of Eden Cherubims, and a flaming sword which turned every way, to keep the way of the tree of life.” Emil Nolde’s painting Paradise Lost, 1921, catches perfectly the moment the penny drops with Adam and Eve on the consequences of falling for the serpent. Yet by the following chapter of Genesis they start a family, moving on with life with new insight. 

To never confront disappointment would be to remain as an infant, without the opportunities to grow and develop as adults. 

In the Good Samaritan, one of the best-known parables, Jesus transforms the categorising question ‘who is my neighbour?’ into the universal quest of ‘how can I be a better neighbour’? Our bonds with our communities, a sense of shared humanity are the best, possibly the only defence, against those who would mislead us or do us harm. 

Celebrated American journalist Ira Glass said: “Great stories happen to those who can tell them.” Published in 2018, The Salt Path’s direct, film-like scenes of survival against the odds and against the elements, would have resonated with all the people who saw their security and lifestyle nosedive after the 2008 financial crash, never to recover. Suspending disbelief, Raynor and Moth’s 620-mile wild camping trek, represented a symbolic railing against a heartless economic system. 

My experience of the penny dropping a fraction too late to escape the scammers, has made me revise my self image as a streetwise Londoner. On my way to pick up holiday money that afternoon, my head was full of travel plans rather than focused on the here and now, a tendency I must curb.  

If my assailant was writing her memoir I like to think our scrap would be the opening chapter, where she is at a crossroads of having to mug somebody in broad daylight, with a small, attentive audience, or rethink her street hustling career. Dressed in a fake leather biker jacket on a hot summer day - the smell lingers in my olfactory memory - her outfit was possibly an homage to Catherine Zeta Jones’ catsuit in Entrapment. As we know from all the TV series on con artists, looking the part is key. 

 Finding out the reality of her life since I broke free of her grip 11 months ago would not be hard, as she is now stationed outside Premier Foods by the tube station, in much scruffier clothes, asking for a pound for water. This sideways, or probably downwards move, in the street economy appears to be working out for her, and the peace of the neighbourhood. 

Despite having lived in small rural communities for decades, throughout all The Salt Path controversy, nobody has come forward to say the Winns / Walkers were good neighbours. Setting this right could be their next adventure and next bestseller. 

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