Features
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.
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.'
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?