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.  

Join with us - Behind the Seen

Seen & Unseen is free for everyone and is made possible through the generosity of our amazing community of supporters.

If you’re enjoying Seen & Unseen, would you consider making a gift towards our work?

Alongside other benefits (book discounts etc.), you’ll receive an extra fortnightly email from me sharing what I’m reading and my reflections on the ideas that are shaping our times.

Graham Tomlin

Editor-in-Chief

Review
Books
Culture
Digital
Leading
5 min read

How a card game, going off-grid, and a great teacher, shaped Bill Gates

A new biography explores the man who shaped the digital decades

Krish is a social entrepreneur partnering across civil society, faith communities, government and philanthropy. He founded The Sanctuary Foundation.

Bill Gates talks from behind a table with a small sign bearing his name.
Bill Gates.
European Parliament, CC BY 4.0, via Wikimedia Commons

It is hard to find Bill Gates the man behind Bill Gates the tech billionaire. The founder of Microsoft is consistently portrayed in the media solely through the lens of wealth, influence and innovation, and with good reason. For decades he has ranked one of the richest men in the world with a net worth of around $113 billion, and his most recent operating system running on over 400 million devices around the world.  

But in the first instalment of his planned three-volume biography Bill Gates reveals something of his personal story - of the rituals, coincidences and relationships that have shaped the man who, like it or not, is shaping all our lives

As someone who grew up riding the wave of the technological revolution of the 1970s, 80s and 90s, I found Bill Gates’ deeply personal portrait particularly fascinating. But the themes of his book resonate even wider - the way he talks about relationship and risk, inclusion and inspiration, memory and morals, are poignant however much time you spend on your computer and however much money you have in your pocket.  

Hearts with Grandma shaped Gates’ childhood 

The powerful influence of Gates’ family, particularly his grandmother, is unmistakable. The biography opens and closes with the woman who called him “Trey,” recognizing his place as the third William Henry Gates in the family. Their close bond developed over the card table, where Gates sat in awe of her mental sharpness. Even into old age she regularly beat him at her favourite game, Hearts. It’s likely not a coincidence that this game made it into Microsoft’s early operating systems: Gates’ way of sharing something of his grandmother with the world. But Hearts was more than a card game. It symbolises the space Gates was offered to learn strategy, logic and focus. It was a levelling of the playing field across generations and an opportunity to discover and refine his sense of identity, competition and connection.  

I found myself reflecting on my own childhood, and those long dark evenings playing Carrom and Rummikub with my mum, at least until I was seduced by Pacman and Elite on my microcomputer. Then I thought about how that played out with my own children who I once taught to play Uno and Connect 4 and who have subsequently introduced me to the challenges of Catan, Carcassonne, Codenames, Ganz Schon Clever, and so on. Card and table games have had their own mini-revolution since the days of Hearts and Patience: they continue to be the school where early learners develop strategy, connection, and identity.  

Off-grid and online life shaped Gates’ young adult life  

Gates’ childhood, as portrayed in his biography, feels like it belongs to a completely different era. It makes me feel uncomfortable as he describes the way he used to disappear as a teenager on a nine-day hike through the Cascade Mountains in Washington State with friends—no mobile phones, no contact with home. In one remarkable story, his parents managed to reach him by phoning a random stranger in a town along his route. That stranger successfully relayed the message that his family’s planned rendezvous had changed. It’s an image from a different world, one of off-grid trust, risk, and adventure—far from the always-on, hyper-connected digital culture Gates would go on to help create. How ironic that the skills Gates needed to become one of the central architects of digital transformation were formed in the middle of nowhere. The infrastructure of today’s information age—its fluidity, reach, and depth—was birthed in mountain walks, wild camping and lake swimming. 

The image of a young Bill Gates forging resilience and perspective far from the digital world is both nostalgic and instructive. Perhaps the next great innovators won’t emerge from the data diet or coding camps but from tents under the stars and homes where screens are conspicuously absent.  

Gates’ neurodiversity is his superpower 

One of the most important influences that emerges during Gates’ school education was Mrs Blanche Caffiere, the school librarian at View Ridge Elementary in Seattle. She not only managed the library but also invited young Gates to work as her assistant—a role that empowered him, nurtured his curiosity, and profoundly shaped his sense of belonging at school. Socially awkward but intellectually gifted, Gates was given a position of responsibility, and that act of trust and inclusion gave structure to his experience of school as well as a place where he could flourish. It’s a powerful reminder of the transformative role teachers can play—especially those who go beyond the curriculum to draw out the unique gifts of each student.  

In the book’s epilogue, Gates reflects on his neurodiversity:  

“If I were growing up today, I probably would be diagnosed on the autism spectrum… During my childhood, the fact that some people’s brains process information differently from others wasn’t widely understood.” 

 His parents seemed to respond to his difference with patience and ingenuity. While they clearly struggled, they also invested in his education and in supporting his mental health. Instead of framing neurodiversity as a deficit, Gates’ family recognised it as a form of untapped potential. And, on reflection, Gates agrees. Seeing the world differently, he has said, is something he wouldn’t trade. 

These three themes come together in one story that really struck home to me. As a child Bill Gates attended church with his sister, and on one occasion this church issued a challenge: any young person who could memorize the entire Sermon on the Mount would earn a meal at the city’s iconic Space Needle in its lofty rotating restaurant. With his agile brain, his family relationships and his growing resilience Gates memorized the entire passage verbatim, passed the test, and earned his reward.  

Memorising 150 verses is no mean feat, but it wasn’t the end of the story. That challenge sparked a deeper interest, and Gates went on to read the entire Bible from cover to cover. He recognized that discovery as a vital part of his journey toward adulthood, forming part of the moral and intellectual foundation that would shape his later life. 

Gate’s story, as told in this first volume, isn’t just a biography of a tech mogul - it is a window into the formation of a complex human being. What emerges is not just a tale of one success, but a testament to the quiet, often overlooked forces that shape a life, a community, and a moral framework. The time spent with a grandmother, the vision of a school librarian, the stillness of a night spent under the stars, the power of a sacred text:  perhaps here is the true source of the man who is Bill Gates.  

Support Seen & Unseen

Since Spring 2023, our readers have enjoyed over 1,500 articles. All for free. 
This is made possible through the generosity of our amazing community of supporters.

If you enjoy Seen & Unseen, would you consider making a gift towards our work?
 
Do so by joining Behind The Seen. Alongside other benefits, you’ll receive an extra fortnightly email from me sharing my reading and reflections on the ideas that are shaping our times.

Graham Tomlin
Editor-in-Chief