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
Awe and wonder
Culture
Digital
Music
5 min read

The rave: a last bastion of hope?

Was the Brat summer the last chance for rave culture?
Ravers pose together for a selfie.
The anniversary party.
Rhythm Section.

The Rave is a site for communal epiphany, a burst of divine revelation. Illegal raves and alternative club culture seeps into the popular imagination, informing it in ways unbeknownst to most.  But it wasn’t until last Summer’s Brat (Charli XCX) landed on the global charts that people began questioning the importance of Rave and Club culture again. Is our Brat the herald of a new golden Rave dawn? I think not.  

However, undergirding the Rave is something far more profound, perhaps even religious. Raving suggests that the world might be otherwise, and it does this through a temporary release from this world’s demands.  What might this say about our cultural moment? 

Coordinating the Rave’s aesthetic is the dance between the DJ and ravers, accentuated by the practicalities of a decent sound system, lights, and a bit of fog. Inaugurating Rave’s epiphany, though, are the diverse motions of bodies to a singular beat. Techno reduces digital sounds to their basics and then pushes that to its boundary. Circumventing the rigidity of technology’s logic are the gestures of human spontaneity on the dance floor. The rave asserts that technology doesn’t have the last say over human life. 

At the Rave, those traditionally on the margins of society become the center: a temporal expression of eternal longing, momentarily experienced as a shared catharsis and liberation. The dance floor is a bulwark against an increasingly de-ritualised and dehumanising society. It is a testament to the body being a medium for hope. Whether an intoxicated body or, in a growing trend, a sober one, it is the human fleshyness which takes priority. Both options respond to how one might cope with and confront the technological barrage.  

Techno began as a language for African American youth, finding a future amidst the industrial ruins of Detroit. In our late modern moment, Rave culture acclimatises the body to the persistent sound of our technological age. It subverts the dehumanising tendencies of digital culture: mass impersonal media and abstracted global conversations.  Instead, a momentary online connection is used to gather offline. When you’re there, you’re not concerned about telling the world. It is an attention to the present moment.  

The Rave harbours a liminal threshold between appreciation for this life and the longing for some next one. 

Worryingly, some have warned that clubs will dwindle to their knees this decade, squeezed out by neighbouring property developers or no longer economically viable amidst the cost-of-living crisis. The only thing being pushed out, however, is the possible resistance to a particularly greedy homogenisation of culture. In dislocating alternative discourses of ritual, we simultaneously assert that human bodies only have one particular “rhythm”: the rhythm of ceaseless economic expansion.  

The Rave resists an uncomplicated acceptance of technology’s gift.  Its goods are re-scaled to an embodied celebration of life. 

In Raving (2023), McKenzie Wark expands upon this, saying, ‘Techno, not as genre but as technique, lets digital machines speak. Not unlike the way jazz lets analog instruments speak… Sounds at the limit of what the machine or the instrument can do to get free. Blackness in sound as the technique of making the thing free to sound off as itself and to take the human with it, into movement, into feeling, into sensation.’  Rave’s sound quite literally brings technology’s language to the end of itself. 

For some, raving is what holds them to life. For others, it’s a momentary release from it. Whilst our bodies cannot exceed techno’s interchange with technology, we do learn how to harness the potential humanness within it. The Rave harbours a liminal threshold between appreciation for this life and the longing for some next one. In twisting its technological medium into a more human configuration, rave culture participates in hope. 

Back in 1965, theologian Jürgen Moltmann wrote, ‘Hope’s statements of promise, however, must stand in contradiction to the reality which can at present be experienced. They do not result from experiences, but are the condition for the possibility of new experience… They do not seek to bear the train of reality, but to carry the torch before it. In so doing they give reality a historic character.’  While Moltmann is writing concerning Christianity and the crucified Christ, his framework for thinking about hope is helpful. Hope never occurs outside of history. The Rave embraces this historical moment and attempts to inhabit it as a contradiction. 

Recently, I went to Rhythm Section International’s tenth-anniversary party at EartH, Hackney. Rhythm Section was founded as a music collective and is still curated by Peckham’s own Bradley Zero (BZ). Known globally, its parties and label imprint span techno, house, jazz, funk, spoken word, and RnB. 

I first danced to BZ’s DJing at a record shop in 2018 while still living in Melbourne. The beauty of this particular community is that it provides a bridge for what Wark identifies: just as jazz brings analogue instruments to their limits, techno does the same for digital. As experienced recently at EartH in Hackney, Rhythm Section tries to push digital and analogue sounds to their threshold across the night. In contrast to the pure techno rave, BZ’s selection causes a polyphonic liberation. Joy is found through the instruments slapped just as much as in the DJ faders pushed.   

This joy was evident in the diversity of ages and cultures present. “Mature heads” danced alongside students; some swayed, while others vogued. Without spaces such as these, where else can we celebrate the diversity of human responses to the same sound? 

My concern with club culture’s demise is that those places of contradiction are swallowed up by a faux vision of “smoothness”. We replace spaces of alternative being with sameness. A diversity of aesthetics is converted into another apartment complex. We make room for the novelty of Brat but not the culture she draws upon. 

Rave culture attempts to redefine the dominant technological language of our day, making the body its lens and not the periphery. By privileging the human body, Rave’s hope acknowledges profound discontent with the world but understands that all “escape” is temporary. This re-calibration enacted in Rave’s ritual de-escalates the supposed importance of technology’s ceaseless expansion. Thus, it exposes a more profound longing, one where it will be an eternal dance that deepens the love of life by going ever deeper into the particularities of individual bodies and their movements.  

Because it offers a form of explicit hope, the Rave is a ritualised space filled with the belief that there can be “something more”. And this more-ness is, ultimately, encountered in the face of those we dance with; whether in a fleeting glance to ask, “Are you alright?” or the mutual smile that says, “I love this song”. 

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