Advances in biotechnology and molecular biology are revolutionising what is possible in the world of medicine. The Rev Dr Lee Rayfield, Bishop of Swindon, looks at the ethical and philosophical questions this raises.
A brave new world?
Historians argue whether the pace of change in our lifetime is faster than at any other in history. Whether this is so or not, one thing is sure: advances in biotechnology and molecular biology are revolutionising what is possible in the world of medicine. And these advances are posing questions for our values, ethics, philosophy and theology which are without precedent.
In the past 50 years, medical diagnosis and treatment have been transformed by a multitude of discoveries and applications. The ordinary man or woman in the street may not have heard of monoclonal antibodies or cytokines or the polymerase chain reaction, but these have hugely affected how a wide range of diseases are assessed, managed and potentially treated.
Underpinning these advances in medicine has been our increasing understanding of genetic and cellular processes. This has gone on in leaps and bounds since DNA (deoxyribonucleic acid) was identified as the molecular basis for heredity and the essential template for living organisms.
At this point in time, scientists have the code for the whole human genome – that is, all the building blocks which make up a human being. However, they know only what a fraction of those sequences of code do. It is like having a detailed parts layout of the whole of a car but not being sure which parts are concerned with steering and which with braking or fuel management. The function of most genes, even though they have been mapped, is unclear or unknown. However, given the pace of progress – and the commercial possibilities – the race is on to turn this information into knowledge. After the next 50 years that will largely have happened.
When the human genome was first sequenced in 2000, some 5 years before the scientific community had expected this gigantic task to be completed, the headlines said it all: ‘The book of life lies open!’
Turning knowledge into wisdom
In the UK, the scientific comprehension of the human genome and, more importantly, what we do with this knowledge has left us with somewhat mixed feelings and reactions. This comes out in the way stories or discoveries are handled in the media. One week the medical and scientific community is castigated under the banner, ‘The little boy that science won’t save!’ The next it is ‘Spare parts supermarket!’ Both stories in the same newspaper, and both relating to advances employing genetic techniques applied to human embryos. The media is a potent driver for public opinion and this can promote a relatively uncritical rejection or embracing of a particular stance. The ethical issues are rarely handled in a nuanced or balanced way, often because they are not straightforward and difficult to do justice to in a short article, much less a ‘sound bite’.
Perhaps the clearest flag for the ambivalence around advances in genetically-founded technologies is the expression ‘Playing God.’ If allusions to the ‘Book of life’ were a nod in the general direction of theology, the accusation of ‘Playing God’ seems a direct appeal. However, that is not quite the case. Playing God is as much shorthand for tampering with nature, reaching dangerously beyond ourselves or opening the doors to biological catastrophe as it is for trying to step into the Creator’s shoes.
For those of us who do acknowledge a divine Sovereign and understand ourselves to be given stewardship within creation, the term ‘playing God’ is indeed one to reckon with and eschew. Yet there is a God-given mandate of creativity and of redemptive activity which we as human beings are to embody and model. What some might describe as ‘playing God’ may be a proper expression of ‘being human’ – that is, being made in the image of God.
Not many of the public may have heard of the polymerase chain reaction, but they have heard of genetic engineering, embryo selection, cloning, and stem cells. Now they are hearing of nuclear-cytoplasmic chimeras, so-called ‘cybrids’, formed between human nuclei and animal egg cells which have had their own nuclei removed. Which of these are ‘playing God’ and which ‘being human’? Where might they lead? What I wish to explore in this lecture is how Christian theology is engaging, or not, and how it might assist our society to make wise choices for the future.
The embryo as an epicentre
Since in vitro fertilisation (IVF) was first licensed in the UK it has become the epicentre for a range of novel procedures and ethical dilemmas. According to figures cited by Gareth Jones in a recent lecture, some 3 million children have now been born across the world through IVF. Although most of the moral and theological objections to the use of IVF have revolved around what happens to unused embryos, it should be born in mind that IVF itself proved highly controversial to some notable theological commentators.
For Oliver O’Donovan, the former Regius Professor of Moral & Pastoral Theology at Oxford, IVF and associated assisted reproductive techniques dissected the strands of parenthood in a way which fundamentally threatened the integrity of reproduction and its purpose. In vitro procedures, if coupled with the use of donor eggs or sperm and surrogacy, distinguished between the genetic origin, the biological carrier, and the social mother. Similarly a father could be distinguished genetically and socially. In theory, if not in practice, a child could have five different parents! O’Donovan warned that IVF had moved the creation of children into the sphere of being ‘made rather than begotten’ and viewed the process of IVF as necessarily lacking in love. An IVF child became a ‘creature’ at our disposal, rather than a gift. To this day Roman Catholic theologians regard IVF as ‘an unworthy method for the coming forth of a new life’ and taking place ‘in a context totally separated from conjugal love’.
Not withstanding these views of IVF itself, it was permitting research on embryos that led to the greatest hostility from Christian commentators. Experimentation, even with the strict regulations suggested by the Warnock Report, has been anathema for those who regarded the fertilised egg as fully human, and consequently bearing the image of God. The granting of licences to control and limit the nature and reasons for experimenting, and a time limit of 14 days, understandably meant nothing to those who saw the embryo as sacrosanct from conception onwards.
A gradual engagement
This position remains that of many Christians but in the UK the influential 1985 Report of the Board of Social Responsibility of the General Synod of Church of England offered an alternative perspective. They rejected an ‘absolutist’ position on the grounds that it did not pay sufficient attention to scientific understanding of the development of the embryo. ‘Personhood’ and ‘individuation’ could not be said to be present before implantation in the uterus. In favouring this ‘gradualist’ view, the Board stated that the human embryo is not subject to the same protection and respect as an implanted embryo. They agreed with the Warnock Report that 14 days was a key watershed. For this reason, unused embryos could be used for research in a way which nevertheless respected the special status of the embryo.
In his PhD thesis, Stephen Bellamy has thoroughly articulated a ‘theological embryology’ which underpins this gradualist position and shows its integrity. He emphasises implantation as a crucial expression of new relationship with the mother. Bellamy also states:
‘.. the time from which the embryo should be afforded the same degree of respect and protection as those made in God’s image remains a matter of informed moral judgement. This is because the designation of being in the image of God is finally God’s judgement as it is a gift of God’s grace and not due to the embryo’s possession of any abilities or powers’.
Such a gradualist understanding of the human embryo enabled many Christians to accommodate to this major advance in medical intervention. However, for some it was a slippery slope which quickly got greasier with the advent of Pre-implantation Genetic Diagnosis (PGD).
Treatment or choice?
Although there are different methodologies, PGD is used to identify genetic markers associated with a known disease within embryos created by IVF. In this way embryos which do not carry the markers can be distinguished and used for implantation. This deliberate selection has led to accusations of eugenics and discrimination against those who suffer from debilitating diseases. It has reinforced the suspicion that the human embryo is being turned into a commodity. But is this so?
When the driver for PGD is a concern of parents to avoid a severe and life-limiting disease such as Duchenne Muscular Dystrophy affecting another of their children it does not follow that this devalues the life of those who suffer from it. The Christian view of human beings as persons made in the image of God requires all people, regardless of disability or incapacity, to be treated with dignity and respect. Neither does PGD imply that those who have a severe disability should have been prevented from being born. Such a choice is a legitimate expression of parental love and acting responsibly for the sake of a further child.
To the charge of commodification, the selection of an embryo in response to a life-limiting medical need is quite different from selection as a result of the personal desire or whim of a parent. The selection of embryos to avoid a serious, known familial disease is consistent with the Christian mandate to heal and does not imply that a baby is being ‘designed’.
That said, PGD has opened up possibilities of selection on the basis of criteria which may be less acceptable to Christian understandings. There are two scenarios which have illustrated this – carriers and ‘saviour siblings’.
Carriers and saviours
Carriers of a recessive disease gene, such as that for Cystic fibrosis, are healthy but run the risk of having an affected child if the other parent is also a carrier. The risk is 1 in 4 (25%). PGD identifies embryos which do not carry a disease gene but can also distinguish carriers from embryos which have both deleterious copies of a gene. Only the latter will develop disease so there is an ethical question as to whether the carriers should be implanted.
The Task Force of the European Society of Human Reproduction and Embryology (ESHRE) asserted that avoiding selecting carriers was not eugenic practice but a ‘wish to spare the offspring the burden of having to make similar decisions for their own offspring’. Given the prevalence of the gene for Cystic fibrosis, the most common serious autosomal (ie non-sex linked) genetic disease in the West, the chances of bearing this burden are less than 1%.
Selecting against carriers introduces a second reason for selection, namely preventing a disease-carrier from having to make a choice themselves. Furthermore, it makes a judgement about the healthy embryos. In Bellamy’s view this expands the reasons for selection, makes us ‘too prescriptive of the future child’ and causes us to treat the embryos more lightly. There is additionally a whole range of unknowns around the genetic health and significance within a population of carriers. We know from sickle-cell anaemia that carriers who have one normal and one sickle-cell gene seem to have heightened resistance to malaria. We cannot know what benefits carrier status might confer for other genes.
There has been far greater controversy around the selection of embryos as so-called ‘saviour siblings’. In two prominent cases, the Human Fertilisation and Embryology Authority (HFEA) was asked to authorise embryo selection on the basis of disease and tissue-type. In both the request related to a condition that could be treated through a cord-blood transplant. The parents wanted another child who was not only disease free but who could offer a tissue matched graft to their sibling. For many this was indeed entering the territory of ‘designer babies’ and infringing the essential freedom of the created sibling.
The HFEA decided in principle that an additional selection on the basis of a tissue match was ethically acceptable. The fact that cord blood could be used for the graft meant that no invasive surgery was needed and this was seen as a morally responsible choice by the parents. However, this decision has been interpreted as using the sibling as a means to an end, rather than as an end in himself. A host of unanswered questions were raised such as the reaction of a child to this kind of selection, particularly in psychological terms. Was this infringing the freedom of the child to turn them into a saviour? Or was it the outworking of love and care in order to bring healing to a brother?
As already stated there were two cases, but one was refused. This was ‘The little boy that science won’t save!’ of the newspaper headline. The reason the HFEA declined to permit the tissue typing was due to the nature of the disease. The child suffered from Diamond Blackfan anaemia, an extremely rare condition whose genetic cause was not known. Because the disease was most likely due to a spontaneous mutation in the child, further siblings were not at risk so PGD was neither appropriate nor permitted.
This decision caused considerable public confusion after the earlier case. The HFEA revisited its own guidelines and agreed that, in very carefully regulated conditions, an embryo might be tissue-typed in order to treat a disease for which the embryo itself is not at risk. This of course sharpens the question as to whether the embryo is being turned into an instrument.
For the HFEA and other commentators, the fact that parents want a child for him or herself is crucial. The desire for a given tissue-type is viewed as an acceptable instrumentality which does not overshadow the child as an end in themselves. Bellamy puts it this way:
‘Thus we conclude that tissue typing of itself does not instrumentalise a child or prevent him being welcomed with agape love and cared for as an end in himself’.
Within the debate has been the recognition that parents bring children into the world for a variety of motives. Some of them might be nobler than others, but the mixture of motives does not automatically instrumentalise the child. Nevertheless, the approval of assisted reproductive techniques for tissue typing selection has certainly been seen as a move in that direction and the safeguards around its practice are vital.
The question of genetic penetrance
In the UK – unlike for example the USA – PGD is closely regulated and has been consistently linked with treatment of severe disease. But this raises subjective issues of what might be a severe disease which in turn is linked to questions of genetic penetrance. Penetrance refers to how likely, and to what extent, a disease gene may be expressed. 100% penetrance means that the particular gene causes disease in everyone who inherits it; 50% means that half will be expected to be disease free.
Two genes associated with breast cancer in families, BRAC1 and BRAC2, have been associated with an 80-90% incidence of developing breast cancer at some time in life. There is also an increased risk of developing other cancers – 60% for ovarian cancer in the case of BRAC1. This level of penetrance has been regarded as sufficiently high for HFEA to permit PGD, a decision supported by the Church of England. However, in their submission the Church of England pointed out that PGD should not be used as a covert form of sex selection by selecting for daughters, and furthermore that their support in this case:
‘… does not imply agreement that PGD should be used for conditions with lower penetrance than these because, with advances in cancer treatment, there may increasingly be less reason to select against embryos with a faulty gene predisposing to inherited cancer.’
The views of Kerry Anderson are significant in relation to this. Her mother died from breast cancer when Kerry was 7 years old and she has opted to have a double mastectomy in an attempt to avoid the disease herself. Nevertheless, Kerry has stated that she would not select embryos free of the disease related BRAC1gene because of her hope in future treatments.
A report in the Daily Telegraph this very week, asserted that PGD had been performed in relation to ‘a serious squint’. Since the HFEA maintain that embryo selection should not be carried out for trivial, social or eugenic reasons but only in relation to disability or a serious medical condition this set some alarm bells ringing. On further investigation it has turned out that the disease is one which leads to blindness – and the HFEA were unhappy about the way this was reported. Instances like this will continue to keep us alert to the issue of how severity is judged.
From embryonic stem cells to chimeras via SCNT
If the science and ethical issues were not complicated enough for PGD, they became a whole lot more complex with the development of embryonic stem cells and therapeutic cloning.
As is fairly obvious from its very nature, cells from an embryo are capable of giving rise to every type of cell and tissue in the body, including gametes ie sperm and egg cells. What researchers discovered in animals is that they could take the cells from early embryos and drive them to become different kinds of specialised ‘end type’ cell. Such stem cells could thereby give rise to nerve cells, skin cells, liver cells, the various kinds of blood cell or any one of a range of differentiated cell types, including those that produce insulin.
What was more significant, in terms of therapy, was how these cells might be transferred to correct specific diseases. Out of this research on animals came the hope of using human embryonic stem cells to derive lines of different types for therapy. This notion captured the imagination of many patient groups who felt there was little chance of treatment for their particular condition. The late Christopher Reeve, the actor who played Superman, paralysed after a fall from a horse, was a well known advocate for this technology.
The cloning of ‘Dolly’ the sheep in 1996 by Ian Wilmut’s research team in Edinburgh was, of course, a major watershed. Dolly had been produced through putting the nuclear material from an adult udder cell into an egg which had been enucleated (ie its own genetic material had been removed). It was a scientific breakthrough which inspired wonder and dread in equal measure!
Although the notion of reproductive cloning of a human being has been almost universally rejected as morally repugnant, and is outlawed in the UK, the cloning technique that led to Dolly had potential therapeutic implications for the research on embryonic stem cells. In theory, an adult cell nucleus could be put into a human egg cell to create embryonic stem cells. One remarkable advantage of this technique would be to provide lines of cells which could be matched to a person requiring a cell line. Such matching would get around possible rejection mechanisms. Such cells could be ‘custom made’ for a recipient. To distinguish it from the cloning that produced Dolly, this has been termed ‘therapeutic cloning’ but is more often termed SCNT – somatic cell nuclear transfer. (Somatic cells are ‘body’ cells as opposed to germline cells such as sperm or egg.)
But, of course, obtaining human egg cells to pursue this line of research was not a great deal easier than obtaining sufficient early embryos to derive stem cell lines. So the notion of creating human-animal chimeras was born. According to this methodology, an animal egg could be used as the enucleated host cell for human nuclear material. It is SCNT between species. The animal egg, rabbit or sheep, would still contain small organelles of animal origin called mitochondria, but as the human DNA began to produce its own proteins and the cells divided, in several generations they would be 90% or more human.
We have come a long way in 30 years in the world of assisted reproduction and genetic technologies! For many, not only Christians, the words of Tom Torrance in 1984 seem to echo down the years:
‘In experimentation with human fetuses, in the manipulation of human embryos, in test-tube fertilisation, in the cross-fertilisation of human with non-human species, in surrogate motherhood, medical science has brought us to an ultimate boundary beyond which a civilised and God-fearing society committed to the sanctity of marriage and the structure of the human family, may not go.’
‘What is at stake is nothing less than the future of the human race, but what is also at stake is the integrity of the scientific and moral conscience.’
According to Jones, the last 20 years have not seen very much change in Christian engagement with the issues posed by reproductive and genetic technologies. The more conservative views have tended to harden as what is being done or proposed becomes more like the future Torrance forbade humanity to enter.
But there have been small but significant shifts. For example, The Church of Scotland has embraced a gradualist view of the embryo which caused them to alter their view of what might be permitted. In addition to these small changes, the usual lines for conservative or more liberal approaches have been broken in places, with arguments for a more – or a less – absolutist line coming from both Catholic and Reformed commentators.
Although hardly an organisation without its own fault lines (!), the Church of England, through its Board of Social Responsibility (now the Council for Mission & Public Affairs) has been highly engaged with the HFEA.
Bishops who are associated with different ‘wings’ of the Anglican church have served on the HFEA as well as other ordained members. This has helped theologians to contribute something of the Church’s wisdom into highly challenging ethical dilemmas. In my view this is an important way in which Christians have managed to hold both a pastoral and prophetic role. Without a gradualist understanding of the human embryo and the development of personhood this would have proved impossible. For Christians, and other denominations of the Church in the UK, who hold an absolutist view it has been far more difficult to engage. Nevertheless, it is not impossible and prophetic and more confrontational positions assist the Church as a whole in discernment.
At this time we happen to be at a crucial stage in the regulation of novel therapies concerning genetics and reproductive associated technologies. The Human Embryology and Fertilisation Act of 1990, which has regulated IVF, PGD and embryo research through the HFEA, is being revised and effectively replaced. The draft bill was due to be published on 8 May but has been delayed. A new body called the Regulatory Authority for Tissues and Embryos (RATE) is proposed which will replace the HFEA.
It is evident that the pace of scientific and medical advance in this sphere has outstripped the capacity of the regulations to manage it. The Government’s intention is that the new Act will be ‘future proofed’ and ‘tie up’ some strands of legislation which currently feel disconnected or out of kilter. The new Act is expected to include provision for the genetic modification of embryos. In the view of members of the Department of Health ‘genetic modification’ is already effectively allowed since therapeutic cloning involves the transfer of genetic material.
However, this reasoning is not sound since the introduction of novel genetic material is different in principle from the transfer of a whole nucleus. Already agencies have questioned why this should be permitted since the modification of germline cells (ie eggs or sperm) in experimental human gene therapy is expressly forbidden. There is cause for vigilance here with respect to what kinds of experiment are being foreseen.
The new Act will also authorise IVF for single and same sex couples. As this is already happening in clinics in one sense it is a regularising of current practice. However, the authorisation of techniques which bring children into the world without any possibility of a father have to be questioned. The Government’s desire to bring equality and to end certain forms of social discrimination is admirable. However, it seems to put the ‘right’ to have children over the right of a person to have a father. Here we seem to be returning to the prophetic warning of O’Donovan with respect to the fragmentation of familial relationships, ‘From now on there is no knowing what a parent is.’
It is also likely that utilitarian perspectives and the demand for freedom of choice will continue to dominate general public discourse. This will be fuelled by the potential commercial possibilities and the activity of scientific and patient lobby groups. The White Paper for the new Act stated that research on human-animal hybrids would be initially prohibited but that specific proposals would be permitted. The Commons Select Committee for Science and Technology challenged this, wanting a permissive approach from the outset. In contrast to the HFEA, who recognised that inter-species hybrids posed a new set of ethical issues, the Committee asserted that it did not (see 10). In 2005 the Committee published another controversial paper recommending sex selection for embryos. In a consumer driven, market economy, pressure can be expected to mount on what is permissible. What was noticeable from the Parliamentary sessions when I contributed evidence was the importance given by MPs to maintaining a commercial and scientific advantage in this field.
Patient lobby groups and commercial concerns are inclined to exaggerate the possible benefits for given techniques and this can set back medical advances by decades. Hype frequently only leads to disillusionment and potentially fruitful avenues being closed prematurely.
Persevering with the quest
As we return to the title of this lecture, it is clear there are many potential ‘futures’ ahead which need a great deal of wisdom. Professor David Ford of Cambridge University has spoken of wisdom and confidence being the greatest needs of our day for the Church. According to Ford, wisdom is arrived at slowly and often painfully and often starts with polarised positions. Gareth Jones is challenging Christians, especially theological commentators, to come out of entrenched positions and try and engage pastorally with the changing world created by advances in reproductive medicine. His is not a plea to shelve convictions but to try and help communities, especially faith communities, to accept that these technologies exist and to shape the ways in which they are applied.
The level of complexity is somewhat overwhelming and it is undoubted hard work for Christians to think through and reflect theologically with such a plethora of new technologies. However, it is greatly needed. In my own work for the Gene Therapy Advisory Committee (GTAC) I have found that a large number of the lay and expert members of the Committee profess a Christian faith. That is heartening. It means that Christians are identifying with society and seeking to ensure the blessings and promise of medical advance are not lost.
Christian theology and ethics bring an impressive array of resources for finding the wisdom of God. We do not have simple answers but we have treasures to assist us in the quest. The incarnation speaks of a God who takes the risk of being involved, who brings healing and also judgement through his presence. Wisdom might begin with us taking those three themes on board more fully.
Image by National Cancer Institute