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
Film & TV
Purpose
Romance
5 min read

The Four Seasons and Dying for Sex hunt all of life for meaning

The TV shows joining academics exploring what it means to flourish

Giles Gough is a writer and creative who hosts the God in Film podcast.

Two women in a composite image.
Tina Fey and Michelle Williams.

A recent Harvard study revealed an intriguing relationship between religion and how well people feel their lives are going. The study suggests that there is a direct correlation between attendance at religious services and happiness.  

The researchers defined ‘human flourishing’ as encompassing all aspects of a person’s life, including happiness, health, purpose, character, and relationships. Perhaps a snappier way to think of this would be “what does it mean to live a full life?.”  

There must have been something in the air that leads to asking this big question, because two TV shows have come out close to the release of this study, both of which tackle what it means to have a fulfilling life. While science has only turned its attention to this topic recently, artists, philosophers and storytellers have been grappling with this one for centuries, and as science has neither Tina Fey, nor Michelle Williams, let’s see what the story tellers have to say  

The Four Seasons 

The Four Seasons is Netflix’s latest comedy drama series based on a 1981 Alan Alda film of the same name. In it, a group of long-time friends in their fifties, who regularly go on holiday with each other have their whole dynamic rocked when Nick (Steve Carell) tells them he plans to divorce Anne, (Kerri Kenney-Silver) his wife of 25 years. Danny and Claude (Colman Domingo and Marco Calvani) are the group’s only same sex couple, but their warm and hedonistic lifestyle is marred by Danny needing surgery for his heart condition, which he keeps putting off. Our point of view characters are Kate and Jack, played by Tina Fey and Will Forte. Initially positioned as the most normal and stable couple of the group, seeing the unhappiness in their friend’s marriages opens a fissure in their own relationship. Kate gets frustrated that Jack appears to turn into a hypochondriac when they’re in private, and Jack resents his embarrassing secrets being shared by Kate as the butt of a joke. As season one draws to a close, we are unsure if these two will repair their marriage.  

The Four Seasons is a show about wanting your remaining days on this earth to be filled with meaning and passion. Dying for Sex has arguably the same motivation but on a tragically compressed timescale.  

Dying for Sex 

Inspired by the story of Molly Kochan and originally shared on the podcast of the same name, Dying for Sex follows Molly (Michelle Williams) as she receives a diagnosis of Stage IV metastatic breast cancer. In a moment of desperate clarity, she decides to leave her husband, Steve (Jay Duplass) and begins to explore her sexual desires for the first time in her life. Aided by her best friend Nikki (Jenny Slate), Molly dives into the world of online dating, finding partners that range from the kinky to incompetent, and finally compassionate. Molly’s one goal is to experience an orgasm with another person for once in her life. An aim that is hindered by a childhood trauma of sexual abuse. Despite the edginess of the title, Dying for Sex is a heartfelt meditation on what it means to find love just as your body is shutting down on you. It includes perhaps the best depiction of the final stages of life for a person with a terminal illness, the show is worth it for that alone.  

Yet one constant remains for believers and non-believers, and it is as trite as it is true; love is the key to a fulfilled life. 

It is important to note that there is a class element to both of these shows. The Four Seasons places good-looking affluent people in beautiful locations and then invites you to feel invested in their relationship drama, like an episode of 90210 for people in their fifties. Similarly, Dying for Sex sees Molly receive some of the best medical care possible, by virtue of still being on her husband’s health insurance. In a country where free health care is not seen as a basic right, the luxury of the facilities she has to hand starts to seem conspicuous. But this is not oppression Olympics and we’re not here to compare people’s pain. The less money you have will certainly decrease the amount of time you have to ponder the meaning of life, but it’s not a question that should be avoided indefinitely.  

The connection between ‘human flourishing’ may be the type of thing that might get jumped on by pastors around the world. But a note of caution is advised here as to how it’s used. Firstly, the Harvard study does not appear to make any kind of distinction between religions. So, if one were to use this study to endorse being a devout Christian, then the same could be said for being a Muslim, Buddhist, Hindu etc. 

Secondly, if the church tells people that becoming a Christian will statistically increase their chances of happiness, it’s doing them a disservice because Jesus never promised that. He distinctly told his followers: “Whoever wants to be my disciple must deny themselves and take up their cross and follow me. For whoever wants to save their life[a] will lose it, but whoever loses their life for me will find it.” That’s a difficult line to swallow in the world of retail religion, but it borders on false advertising to ignore it. 

Lastly, as critics have pointed out, even if faith improves happiness, it doesn't make the beliefs automatically true! If used as a guiding principle, the pursuit of happiness could have you swapping churches, denominations, even religions until you find what makes you happiest.  

These two shows stimulate an interesting thought experiment; whether a relationship with God would have made a difference in their lives? For Kate and Jack in The Four Seasons, the answer may well have been yes. For Molly in Dying for Sex the answer is a little trickier. Jesus doesn’t condone a promiscuous lifestyle, but the drive towards that was borne out of a fundamental lack of connection with her husband. The main thing that Jesus does promise his followers is connection, either directly with him, or with those walking the same path.  

You can have a fulfilling life outside of God, it would be disingenuous to say otherwise. Yet one constant remains for believers and non-believers, and it is as trite as it is true; love is the key to a fulfilled life. Molly finally attains it when she finds true love, Jack and Kate begin to lose it when they fear their love might be slipping beyond their grasp. 

But the one area where faith might just differ from the secular is that Jesus lived out his time on this earth as a walking talking example of perfect love. Patient, kind, quick to forgive. The kind of example that’s impossible to completely emulate, but still worth trying. 

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