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Learning to play God

John Bryant

The pace of change in genetic science in recent years has been unprecedented, bringing choices unimaginable to previous generations. John Bryant goes in search of a definitively Christian response to today's bioethical dilemmas.

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On July 4 1994, in Denver, Colorado, Lisa Nash gave birth to baby Molly - a first child for her and her husband Jack. It was not entirely the happy event that they had anticipated, however, because it quickly became clear that Molly had Fanconi anaemia. This is a rare genetic condition caused by a recessive mutation - the disease only occurs when a baby has a copy of the mutated gene from each parent. The most devastating feature of the disease is an early failure of the bone marrow, usually first seen between the ages of three and five. From then on, the production of blood cells becomes more and more inadequate, leading to death, usually in the early teens.

Molly's condition showed Jack and Lisa that they were both carriers of the Fanconi mutation. Fanconi anaemia, with a carrier frequency in the general USA population of one in 300, is actually very rare. Indeed, most obstetricians and paediatricians have never seen a case. However, Jack and Lisa Nash are both Jewish, tracing their lineage back to the Ashkenazy Jews who came to the USA from Eastern Europe. Among Ashkenazy Jews, the carrier frequency is one in 90; furthermore, the mutation present in this population causes the most severe form of the illness.

A LIFELINE
Until relatively recently, all that parents of a Fanconi sufferer could do was to love their child, avail themselves of all possible means to lessen the child's suffering, and watch the child slowly die. However, when Molly was about two years old, Jack and Lisa were offered a possible means of saving her life. If she had a bone marrow transplant from a closely matched donor then she would have at least a 50 per cent chance of survival. However, she was the Nashes' first and only child and thus had no siblings - but what if she had a sibling who could donate compatible bone marrow? I feel sure that any idea of having another child had been put firmly on the back burner because of the demands of looking after Molly, and yet here it had been offered as a possible means of saving her.

There are obvious snags with this. As with all recessive conditions, each child has a one in four chance of having Fanconi anaemia. Further, even if the child did not have Fanconi anaemia, it would not automatically be an immunological match for Molly. Jack and Lisa might need to have several babies before the right combination was found, with that one-in-four chance constantly playing on their minds and with Molly getting more and more ill.

However, another way was set before them. Genetic testing of embryos created by in vitro fertilisation - IVF - had been available for certain genetic conditions since about 1990. Couples who are at risk of having a child with a heritable illness may be offered this procedure, known as pre-implantation genetic diagnosis - PGD. The embryos are tested at the eight-cell stage, about two days after fertilisation; only embryos that are free from the genetic mutation are implanted. Embryos are thus selected or rejected on the basis of possession of a particular gene. It was therefore possible, with the technology available in 1996, to test embryos both for absence of Fanconi anaemia and for immunological compatibility with Molly. Provided Lisa became pregnant when the selected embryo(s) was/were implanted and carried the baby to term, a donor for Molly would be born. Was this a right course of action for Jack and Lisa? Did they have ethical reservations? Did their Jewish faith help them to make the decision?

ALTERNATIVE ETHICS
We will return later to look at what they decided but in the meantime, it is good to face the challenge of applying traditional ethical frameworks in such cases and to ask ourselves whether or not our Christian faith helps us to make a decision. Is there, for example, a specific outcome if we apply Christian ethical thinking in these situations?

Ethics has been broadly defined as a (philosophical) study of the principles involved in making moral decisions. The Oxford English Dictionary puts it thus, 'moral principles that govern a person' behaviour or the conducting of an activity ... the branch of knowledge that deals with moral principles'. Morals - the idea that some actions are right and some are wrong - are at the heart of ethics but how do we find or work out these moral principles? We can distinguish four main approaches to these questions.

Natural law ethics proposes that what is right is that which enables humans (and other entities) to reach their natural potential or to flourish. Aristotle is the best known proponent of this approach. In the Christian era, St Thomas Aquinas (1226-1274) was a supporter of natural law, suggesting that it derives from the wisdom with which God rules the created order; humans need to bring their thinking into line with this divine wisdom. Elements of natural law thinking, derived from Aquinas, are encountered today in the Roman Catholic prohibition of contraception.

RIGHTS AND DUTIES
Deontological systems (from the Greek deon, duty) are systems based on rules and duties. Such systems lay down clear, 'black and white' rules. Deontological ethics is sometimes known as Kantian ethics because of the framing by Immanuel Kant (1724-1804) of his imperatives which he regarded as being universally applicable, typified by the categorical imperative 'Act in such a way that you treat humanity, whether in your own person or in the person of any other, never merely as a means to an end...' or, putting it in more modern terms, 'do not use other human beings merely to gratify your wishes or desires.

The Ten Commandments, with their apparently straightforward rules, are often regarded as examples of deontology - although to my mind, there are elements of virtue (see below) embedded within them. In modern times, deontology is often expressed in terms of rights and duties; a definition of the rights of every human also defines the duties of every human in not transgressing another's rights. However, what is included in a person's rights is a matter for vigorous debate.

In consequentialist systems, the main consideration is what happens as a result of an action being taken. Are the consequences 'good' or 'bad' (however an individual defines good and bad)? If the consequences are good, then the action is good. Consider the idea that lying is wrong. Under a deontological system one never lies (Kant was very emphatic about this). Under a consequentialist system, lying may be regarded as acceptable, or even right, if the outcome is good. Applied more widely, the version of consequentialism known as utilitarianism defines as good those actions that promote the most (or most widespread) happiness or satisfaction. There are clear dangers with consequentialist systems. Consideration only of the results of actions can lead to us accepting that the ends always justify the means. There is also the possibility, even likelihood, in utilitarianism, of ignoring minorities whose interests are not served by decisions that please the majority.

In secular Western society, consequentialism in its various forms, but containing some elements of deontology and occasionally taking in a smattering of natural law, is the main ethical system used by most people in moral decision making. However I also note the influence of post-modernism and/or existentialism in statements such as 'What feels right for you is right for you; what feels right for me is right for me.'

VIRTUE ETHICS
But there is another way. We see it alongside natural law in the writing of both Aristotle and St Thomas Aquinas. Aquinas maintained that good ethical decision making involves bringing our human wisdom into line with God's wisdom. So, while that wisdom defines the natural law, we also see that human character has to grow or to be changed to fulfil that law. In other words, character and virtue (including wisdom), contribute strongly to our decision-making in a system known as virtue ethics. In the 21st century, virtue ethics is making a comeback, that comeback having been kick-started back in 1981 when Alasdair MacIntyre published his influential book, After Virtue. I need to emphasise that virtue ethicists do not disregard the law or throw away the rule book. After all, if I drive at 50mph down my village street, I am hardly acting virtuously. Neither do they ignore the likely outcomes of their actions. 

Appropriate consideration of rules and consequences is part of a virtuous approach to moral decision making.

Where does all this leave us in respect of Christian ethics, often thought of by non-religious people as a set of (largely negative) rules? I am one of many Christian ethicists and theologians who regard Christian ethics as a virtue ethics system. Tom Wright is an articulate proponent of this view, insisting that true Christian ethics, rather than being a negative legalistic system (as the early proponents of utilitarianism suggested) is a positive virtue ethics system. The ethical teachings of Jesus are based on virtue: 'What we do not find then, is Jesus held up or holding himself up, as an example of someone who "kept the rules", reinforcing or reinterpreting them. The way of life he was modelling was precisely not something that could be reduced to rules, or undertaken simply by the effort to conform to certain laid-down norms. Nor could it be arrived at ... by calculating and weighing of likely effects of certain behaviours, with those calculations leading to decisions and actions… The only way we can get to the heart of understanding the moral challenge Jesus offered and offers still today, is by thinking … of virtue - a virtue that has been transformed by the kingdom and the cross.'  

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A 'CHRISTIAN' VIEW?
How then does this work out in the context of the choices presented by modern science? We are dealing with situations and processes that were not even dreamed of in Biblical times and thus we cannot (and indeed should not) expect to find specific guidance in the Bible. Several writers, most notably the US theologian and ethicist Richard Hays, warn against looking for such guidance about topics on which the Bible is silent and against trying to fit verses or passages from the Bible into situations for which they were never intended. It is very much a virtue-based approach that enables us to make wise decisions on such topics.

Perhaps the key question in the case we are considering here is how far do our 'moral boundaries' extend? Who or what is the object is the object of our moral decision-making? Under any of the ethical frameworks discussed above, killing a person is considered to be wrong. We therefore need to consider whether the pre-implantation human embryo is a person or not. If it is, then we have a simple deontological decision. Use of IVF and PGD to select a particular embryo means rejecting other embryos which, as likely as not, will eventually be disposed of after languishing for some years in a freezer. This would be wrong and thus Jack and Lisa Nash should not take this course of action. Roman Catholic ethicists, such as Pope Benedict XVI and Agneta Sutton certainly take this line.  

Many conservative evangelicals, both in the UK and the USA, also hold this view. In November 2011, citizens of the state of Mississippi voted on a proposal to define the fertilised human egg - the one-cell embryo or zygote - as a human person. Had this proposal, which emanates from the Christian Right and from the Republican Party, been passed into law, abortion, the destruction of pre-implantation embryos and the use of the morning-after pill would all have been classed as murder. IVF would have been outlawed unless only one embryo is created per treatment. This is clearly a 'black and white' deontological position; again we are left with no doubt about what decision should be taken in respect of the choice offered to Jack and Lisa Nash. In the event, the proposal (the so-called 'personhood amendment') was defeated, with 55 per cent of voters rejecting it. Another state, Colorado, the home state of the Nash family, had already rejected a similar proposal by a rather larger majority.

By contrast, many Christians are equally clear that there is no Biblical basis for regarding the pre-implantation embryo as a person, a position with which Richard Hays, among many others, would agree (see above). There are also good biological reasons for suggesting that the pre-implantation embryo should not be regarded as a person. Even so, as emphasised by the Warnock Committee, that does not mean that we treat them in a cavalier manner.

There is one more issue to consider. Even if we do not regard the early human embryo as a person, we can ask about having a baby that is specifically selected to provide for an already-born human being. Does this run counter to Kant's imperative about not using another person as means of fulfilling our wishes or desires? Are we using the new baby as a commodity? Do we love the baby for its own sake? Doubtless, all these questions crossed Jack's and Lisa's minds as they made their choice and thus we now return to their case, asking in passing, what decision might have been reached based on Christian virtue ethics?

SAVIOUR SIBLING
Jack and Lisa decided to proceed with IVF and PGD and they thus embarked on the most emotionally (and for Lisa, physiologically) gruelling four years of their lives. When Molly was two and a half years old, Lisa started the first of four unsuccessful rounds of IVF. During this difficult time the family was strongly supported by the love, prayers and practical care of the Jewish community, support for which they remain grateful. When Molly was five and half years old and by then quite ill, Lisa, in what she regarded as one last attempt (they were not sure that Molly would live much longer), underwent a massive super-ovulation to produce 24 eggs. 14 embryos were produced, of which just one satisfied the necessary genetic and immunological criteria. This was implanted, Lisa became pregnant and baby Adam was born on 29th August 2000, a few weeks after Molly's sixth birthday. On October 4th Molly received a stem cell transplant, not from Adam's bone marrow but from the blood collected from his umbilical cord. Emphasising that the Nashes' Jewish faith is very much part of who they are, a rabbi prayed with and blessed the family during the transplant procedure. The transplant worked, Molly's life was saved and she is now a lively teenager. Adam Nash thus became the first genetically selected saviour sibling.

Public announcement of the procedure led to a storm of comment. A significant amount of it, especially that emanating from conservative evangelical and Roman Catholic Christians, was extremely negative, much of it focussing on the idea that the pre-implantation embryo should be regarded as a human person. However, along with Lisa Nash herself, and whatever our view of the early embryo, we need to note that none of the Christian critics acknowledged the Nash family's Jewish faith, in which the early embryo is not regarded as a human person and in which there is an imperative to do whatever is necessary, with the exception of committing murder or adultery, to preserve life.

DESIGNER BABIES?
Some of the criticism of Jack and Lisa Nash came from secular sources, including commentators in the media. Here it was mainly the spectre of 'designers babies' that was raised - the idea that couples would use this procedure to select for particular genetic traits that they wished for their offspring. It is certainly true that as our knowledge of human genetics has grown, so has our ability to test for particular genes. At the time of writing some 2,200 tests are available for genes directly linked with disease (as with Fanconi anaemia or cystic fibrosis for example) or which are in some way implicated in disease. Of these, about 100 have been licensed by the UK's Human Fertilisation and Embryology Authority for use in PGD. So, to put the whole thing in perspective, about 12,000 IVF babies are born in the UK each year. About 200 of these have come via PGD, not because they are saviour siblings but because their parents wanted to avoid having a child with a serious, difficult, life-shortening genetic condition.

Yes, we are also increasingly able to test for genes that have nothing to do with disease but which are involved with our physical makeup or appearance or which make a contribution to behaviour or sporting prowess. Parents could use PGD to select for or against particular genes. However, it would require a high level of motivation because IVF is no walk in the park (as Lisa Nash would confirm). Further, the IVF may be unsuccessful, as in tragic case of one of very few couples in the UK given permission to try for a saviour sibling: the mother has miscarried several times and thus the sick child still waits for a stem cell transplant. Nevertheless, as the power of genetics, genetic selection and genetic manipulation grows, ethical vigilance is essential.

A LAST WORD
Lisa Nash challenged her critics: 'We wanted a healthy child. We wanted a child who would not suffer the way Molly suffered. And we made a decision for our family, not for the world to take issue. In my shoes, you would have done the same thing.' And that is also a challenge for us: would we not have done the same thing?

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