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
Addiction
Culture
Film & TV
Monastic life
5 min read

Mother Vera: from heroin addict to heroine helping the recovering

The horse-loving orthodox sister with a liturgy for life, and a dilemma.

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

A nun on a white horse, gallops across a snowy field, in black and white
Equine therapy.
She Makes Productions.

Across the arts, the recovery journeys of people with addiction and mental health issues are being re-narrated, giving voice to the navigators of their own personal transformation. In Mother Vera, the Grierson award winning documentary about a recovery community surrounding the Saint Elizabeth Monastery in Minsk, ritual and nature’s unfolding therapeutic power take centre stage. 

From Sister Act I and II, to The Sound of Music and Black Narcissus, big screen depictions of women’s monastic life tend to be overwrought. But Mother Vera is different. Shot in black and white, Cécile Embleton and Alys Tomlinson’s documentary visually pays subtle homage to Black Narcissus’ bell tower scene, with a nod to Citizen Kane here and a wink to Andrei Tarkovsky there, but the overall tone is sober, in every sense of the word. 

At the heart of the film is charismatic Mother Vera, a horse-loving orthodox nun, whose story of heroin addiction and betrayal by her onetime partner is micro dosed throughout the film. Surrounding Vera are a team of world-weary men, who she organises into readers for the monastery’s liturgies, as well as directing them in caring for the community’s cows and horses. They declare themselves “snowed in” by the monastic routine of “processions and liturgies” and relentless rounds of physical labour: shovelling snow and ice, feeding and grooming the animals. But the recovery community also acknowledges the bounded routines of the monastery keep them alive, able to face down their longing for drugs and drink. The rhythm of the natural world is woven into the liturgical year as Christmas cribs are replaced with Easter celebrations, all linked by scenes of candlelight, prayers and genuflections.

Early on in the film, Vera slips a puffa jacket over her black habit and gallops across the snow on a white horse. Without giving away too many spoilers, Vera’s desire for a life beyond the borders of the monastery grows as her story develops. Visits to her family show adolescent nephews and godsons growing into strapping maturity in her absence. Her mother relates the time Vera overdosed, 20 years ago, and doctors told her “to prepare for every outcome.” Vera reflects on how her charisma influenced “fresh faced girls” to become heroin users. For Vera, heroin went from being a portal of insight and revelation, to “showing its true face” which was diabolic. In monastery community meetings men praise how Mother Vera helped them to “reconstruct”. 

Vera initially joined the monastery for a year, to wait out her partner’s prison sentence. Twenty years on, she has reached a new phase of her own reconstruction. Immersing herself in a river, her parting words are: “Let’s move on. Let’s continue. Amen.” 

The community at Saint Elizabeth Monastery echoes the residents of W-3, the psychiatric ward in the American teaching hospital described in Bette Howland’s memoir W-3 first published in 1974, and republished four years ago. The author is admitted to hospital following an overdose, while she struggles to raise two children alone, on a part time librarian’s wage, while also trying to write. “For a long time it had seemed to me that life was about to begin – real life. But there was always some obstacle in the way. Something to be got through first, some unfinished business; time to be served, a debt to be paid. Then life could begin. At last it had dawned on me these obstacles were my life. I was always rolling these stones from my grave.” 

Howland positions the institutionalised rhythms of the hospital as the supreme life force, and ultimately more curative than talking therapy or medication. “For the sick in their beds were invisible. They were there only by implication. They must have existed, if only for the sake of this other life, full of importance – the bustling arms, starched coats; the carts, mops, ringings, beepings; the brisk comings and goings of white stockinged nurses.” The invisible, timeless guiding spirit of the hospital “as mysterious as a submarine”, would prevail regardless of what the medical staff or patients did, or resisted doing. Realising they were not the ones calling the shots, was the first step for Howland and her fellow patients to returning to life outside the hospital. 

Accepting community and kinship, rather than superiority or aloofness, with others in recovery is also a key feature of Saint Elizabeth Monastery and W-3. “Nothing was original on W-3, that was its truth and beauty,” writes Howland. And continually telling and re-telling her story to fresh batches of medical students, under a psychiatrist’s supervision, eventually allowed it to be transcended. “It is not strictly accurate to say that these interviews were of no use to us. Because you would have to tell your story yet once more, all over again. And each retelling, each repetition, hastened the time when you would get tired of it, bored with it, done with it – let go of it, drop it forever – could float away and be free.”  

In Mother Vera members of the lay community argue about accepting a new member, who may have been raped in prison, and is labelled a “downcast”. But the argument against allowing prison hierarchies to overshadow their new community wins the day, with the new member being integrated, and objectors accepting “you are no better than him.” 

Contemporary approaches to mental health and wellbeing also pivot on an acceptance of shared humanity and imperfect day to day life with its relentless demands, as well as acknowledgement of a power outside human control. In the Netflix documentary Stutz, actor Jonah Hill charts his sessions with Hollywood psychotherapist Phil Stutz. Stutz counsels his clients there is no escape from pain, uncertainty and hard work. To try to avoid these conditions, whether through fantasy or substance or addiction, is to live in the Realm of Illusion. Progress and satisfaction can only be achieved by embracing the here and now, and doing the next necessary thing for life to continue. Stutz calls these actions the String of Pearls, urging his clients to be the one to put the next pearl on the string. The outcome of the action is immaterial, it is the self -belief fostered by taking real world positive action in support of self-flourishing, that is critical. 

Stutz believes in a force for good he calls Higher Forces, and a malign force thwarting human growth he calls Part X. For Mother Vera her latter days at the monastery when she felt she could be of more service in the outside world were “tricking God”.   

From a Minsk monastery to a Hollywood therapist’s office, to a 1970s hospital, an acknowledgement of the divine, together with an embrace of each other and demands of daily life, emerge as key tenets of recovery’s long road. 

 

Mother Vera is released in the UK from 29 August.

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