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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Review
Culture
Music
Politics
6 min read

As the congregation gathers Bruce Springsteen leans hard into hope

Chords of confrontation and communion

Elizabeth Wainwright is a writer, coach and walking guide. She's a former district councillor and has a background in international development.

Bruce Springsteen crouches down and holds a hand out to a sea of outstretched hands
Springsteen plays Manchester.
Brucespringsteen.net.

I finally got to experience a Bruce Springsteen concert recently. Which is to say, for three hours, I touched a land of hope and dreams.  

We walked along a canal to get to the arena – my husband, my father-in-law, and me –Manchester shimmered with the arrival of summer, and light bounced off red brick and still water. We neared the arena and the air felt dense with anticipation. T Between us we carried heartbreaks, elections, hopes, failures, and a collective return to music that had accompanied and clarified it all. We were drawn by loyalty and nostalgia and joy, but also I sensed by a hope that Bruce would meet the moment — the frayed, furious, anxious now — with something that mattered. 

We found our seats and gripped our drinks as the lights dimmed. Thousands of people stopped individual conversations, and hushed, and then joined voices into a deep and reverent chant. “Bruuuuuuuce”. To my right, the glow of a screen, the woman holding it sending a text – “yes babe, 1pm, lovely” – and it seemed incongruent and true. In the tension before the release, in the dark before the light, we hold our breath even as the ordinary carries on. The ordinary carries on even as the world fractures and glows. The ordinary is what Bruce often sings of, it is one reason why fans feel heard and seen by him. That night though, all the ordinaries he sang of formed something extraordinary.  

Then there was light, and Bruce walked slowly from the side to the front of the stage, his guitar suspended across his body, his face a relaxed, broad smile, his bandmates and companions beside and behind him. Then there was music. No videos, no pyrotechnics; just old songs that felt as if they existed for the now. My City of Ruins, Death to My Hometown, Land of Hope and Dreams, The Promised Land. The song Long Walk Home was introduced as a “prayer to my country”. It is a country that he embodies, despairs of, and loves. He sings of his home with fury, sorrow, tenderness, and love.  

Riffs and rhythms that were decades old were being made urgent again. Springsteen’s music holds both grit and glory, and hard-won joys leave space for sorrow. I write this and lines by Mary Oliver come to mind: “We shake with joy, we shake with grief / what a time they have these two / housed as they are in the same body.” What a time they had, joy and grief, that night with Bruce.  

The evening unfolded not as spectacle but as liturgy; all of us involved in something like devotion – in part to Bruce, but also to moral clarity, to the power of poetry, to the promise of who we could be. At times the crowd seemed silent, ushered into something deeper – not entertainment or escapism, but something like confrontation and communion. We were being offered the joy of music and memory, but also an opportunity to reckon with who we are.  

Between songs, Bruce spoke. He apparently rarely does so in his gigs. His voice slowed and deepened – not chit chat, not to entertain, but to bear witness and stand defiant and call us to the best versions of ourselves. “I’ve spent my life singing about where we’ve succeeded and come up short in pursuit of our civic values,” he said. “I just felt that was my job.” He proceeded to describe how those values are being torn apart, and why they matter. The crowd roared. He was making civic values shine, speaking about them with urgency. He acknowledged both the dream and the failure, but still he believes in the promised land and he asks us to as well. Before he belted out Rainmaker, he said, “when conditions in a country are right for a demagogue, you can bet one will show up.” He spoke of America, and really of the world – what it is, what it is becoming. His honesty and poetic rage situated us, then became a map for how to keep going.  

We can be glad to be alive even while we are honest about sorrow, injustice, broken politics, fractured families, and tired hearts. 

I found myself wondering: why is it that Bruce can sing and speak about justice, warped politics, and who we are becoming, and be met with cheers, while so many churches avoid doing so, preferring instead to whisper in neutral tones while the world burns? That night, I stood in a crowd of thousands and I heard a kind of moral clarity that orientates the soul and made me cry. It wasn’t partisan, it was human. Why can it feel riskier to speak specifically and prophetically in a sermon than in a stadium? I wonder if it’s because Springsteen has always rooted his politics in people’s real lives – in work, family, grief, memory. He doesn’t gesture toward abstract ideologies for fear of alienating people, or in the hope of retaining fans: he tells stories and gives names to problems and injustices, singing about crooked institutions, boarded-up factories, buses that never come, lovers who don’t come back.  

The evening felt, for me, like the kind of church I long for and sometimes touch: no tidy answers, no insincere lyrics, no vague calls for justice, but rather honesty and specificity and the chance to stand alongside strangers and feel something challenging, beautiful, true.  

I scribbled a question as the music soared: can a chord be mystical? Because that’s how it felt. As if there are progressions – minor then major, dissonance into harmony – that can reach past language and speak directly to the part of us that longs for love more than cynicism, to the part of us that still dares to hope even when there is very little obvious reason to do so, to the part of us wondering how to be truly alive.  

Near the end, Bruce quoted the American writer James Baldwin:

“In this world, there isn’t enough humanity as one would hope. But there’s enough.”

There’s enough. It was a small phrase but it hung in the air like incense. For Bruce, there is enough humanity to keep singing for, and about. Now, he seemed to ask the crowd, what will you do with that enoughness, with that humanity?  

In the final stretch, Bruce leaned hard into hope with songs like The Rising and Born to Run. The energy in the room felt like resistance – not against something, but for something. He didn’t pretend everything’s fine, but he sang anyway. “It ain’t no sin to be glad you’re alive.” 

We can be glad to be alive even while we are honest about sorrow, injustice, broken politics, fractured families, and tired hearts. Gladness is being asked to stand its ground now, and to do something with our improbable aliveness. For the final song, Bruce played Bob Dylan’s Chimes of Freedom. It is a song about lightning and exiles and freedom, about the trembling of the soul and about a sky that “cracked its poems in naked wonder.” He sang it slowly, tenderly, like a prayer – which can also be a trembling of the soul, a song of naked wonder. Perhaps he prayed to God, perhaps to some other sacred thing: our better angels, or the fragile hope of who we might yet become. 

In a BBC documentary about Bruce Springsteen’s history with the UK, someone says “there’s something in Bruce fans, you know you can implicitly trust them.” As we filed out of the arena, it felt like 25,000 of us briefly knew each other, trusted each other, could take on the world together. Perhaps we just had.  

Soon it was just me, my husband, my father-in-law, and the silent dark canal as we walked back into the night. We were tired, we were awake. I thought of Bruce’s belief in the promised land, and of Baldwin’s line: there’s not enough humanity, but there’s enough. These are beliefs that can feel risky. So can belief in God. But enough is plenty. Enough can turn up the volume and let the spirit be our guide. With 25,000 other people, I’d turned that volume up and I could hear the spirit defiant, unifying, guiding. It is – has always been – time to go and sing of it, despite everything.