Debating 'designer babies'
By Ellie Lee
There seems to be endless
debate about 'designer babies' today. Whether pregnancies
should be conceived using reproductive technologies has become
the subject of much public discussion.
Pre-implantation genetic diagnosis
(PGD) - where embryos are screened for gene faults before
being transferred to a woman's uterus - has come under the
spotlight recently in the UK, with high-profile cases such
as that of the Leeds-based Hashmi family. The Hashmis have
a child with a rare blood disorder, who urgently needs a bone
marrow transplant. Through using PGD, the Hashmis may be able
to have a child that is free from the disorder suffered by
their existing child. The child yet to be born could also
donate tissue to cure its sibling. The Hashmi case became
the subject of months of legal wrangling in the UK courts.
Josephine Quintavalle of Comment
On Reproductive Ethics (CORE), which is generally opposed
to the use of reproductive technology, challenged the decision
made in 2002 by the UK Human Fertilisation and Embryology
Authority (HFEA) that the Hashmis could have the treatment
they wanted. CORE argued that in this instance, using PGD
would mean that the new sibling yet to be born would be treated
as a 'commodity'. But, in April 2003, the courts eventually
rejected Quintavalle's case, and the Hashmis can now go ahead
This latest discussion about
a couple's desire to use PGD shows that what people do in
their reproductive lives is not just their business. The Hashmis'
situation has been a matter of discussion for other people
and organisations for a long period. Even before the Hashmi
case got to the courts, the HFEA - a public body set up by
an Act of Parliament passed in 1990 - had scrutinised the
Hashmis' reasons for wanting to use PGD and had deliberated
over whether these reasons were good enough.
Such scrutiny of the Hashmis
reproductive choices is nothing new. The HFEA has been discussing
PGD, and whether people should be able to use it to screen
pregnancies, for years. According to Sara Nathan, a member
of the HFEA ethics committee, 'there are always hard cases
and difficult decisions'. One area that currently raises 'big
ethical issues' for the members of the ethics committee, Nathan
states, is sex selection. Should this be available for medical
reasons only - where a disease, such as haemophilia is sex-linked,
and where PGD can be used to ensure that only female embryos
free from the gene for this condition are implanted? Or should
parents be able to sex select for other reasons too - for
so-called social reasons?
Nathan and her fellow committee
members have set themselves the task of deciding whether those
who request to sex select should be allowed to do so. As a
result, the question of whether individuals should be able
to use reproductive technology to choose the sex of their
baby, has recently been subject to a second public consultation,
initiated by the HFEA to elicit people's views on such questions.
As issues such as these come
to the fore, a consensus seems to be emerging that, when it
comes to reproductive technologies, people's choices in these
matters are of general public interest. But why should this
be the case? How has our culture come to be so fixated with
others' reproductive lives?
It is often argued that this
new interest is an inevitable corollary of new techniques
and innovations: that because of the invention of in vitro
fertilisation techniques (IVF) in the first place, and the
fact that there have been further innovations since, this
debate was bound to happen. Science, it is often said, is
running ahead of ethics and regulation. But while there have
been some major advances in reproductive technologies, some
of the techniques that are currently causing such controversy
are not sudden or particularly innovative.
PGD has developed fairly gradually,
in a technical sense as an extension of IVF, but also in the
rationale for using this technique. For many years before
PGD, antenatal diagnosis has been routine, and there is nothing
new about trying to identify abnormalities pre-birth. Further
innovation, in the areas of tissue typing (the technique the
Hashmis want to use) and the identification of more gene faults,
is not happening as fast as it is sometimes made out to be.
Sex selection, as noted above,
is already in use in certain cases. And the use of IVF in
humans, while a spectacular technical achievement, is not
new in the sense that it is a measure designed to overcome
the problem of infertility. 'Assisted conception' using donated
sperm and very basic technology, and also surrogacy, is a
long-standing feature of human procreation.
What is driving the debate
about 'designer babies' is not unprecedented innovation at
the level of science. The key issue relates to what has changed
in culture and society: which can be summarised as the rise
of a culture of vulnerability.
A culture of vulnerability
Today's society is experiencing
a growing anxiety about our ability to cope with innovation.
Change tends to be viewed in a very one-sided way, as something
that is likely to bring about harm. There is a sensibility
that if we innovate, it will generate unforeseen problems
and dangers that we will not be able to cope with.
It is this that allows just
about every debate about reproductive technologies to be dominated
by the idea that we need to be worried about scientists 'playing
God'. Innovation is viewed as a force external to us, over
which we have no control, and which will therefore make our
Crucially, however, the ambivalence
about innovation, particularly in relation to new reproductive
technologies, is not driven by general public concerns, but
by the fears of the scientific and political elite. Infertile
couples have proved themselves keen to take advantages of
the possibilities provided by techniques like IVF, and, as
the Hashmi case shows, determined to make use of the more
innovative techniques to save the life of a sick child. The
public reaction to specific cases, like that of the Hashmis,
has largely been sympathetic.
The elite, however, has expressed
caution and concern at every turn, and encouraged a particular
kind of debate that gives great prominence to notions of vulnerability,
and the potential problems caused by unintended consequences
of new developments. The aim of the 'designer babies' debate
has not been to confront fears that some people have, by making
a strong case for innovation, but to harness these fears and
attempt to alleviate them through designing safeguards and
While the original opposition
to IVF was traditionally conservative, with the Catholic Church
prominent in the anti-camp, today's opposition to new reproductive
technologies is often articulated by those who consider themselves
radical - environmentalists, certain strands of feminist opinion,
or some parts of the disability rights lobby. Far from being
marginalised, these views have a wide resonance with an elite
that is increasingly ambivalent about innovation and change.
Perhaps this helps to explain why fears about 'designer babies'
From GM crops to embryo research,
new developments in the field of genetics today prove themselves
continually controversial; and the elites across the Western
world find themselves unwilling to, or incapable of, providing
a robust defence of experimentation in these areas. While
it may appreciate the advantages that such developments might
bring, there is a palpable nervousness about the consequences.
The 'designer babies' issue
provides a particular focus for these fears, because it is
about parents and children. As such, it feeds into another
powerful prejudice of our times: the mistrust of individuals'
motivations, and their impact upon others.
From the point of conception
onwards, parents are now viewed as a 'risk factor' in their
children's lives. Look at the health authorities' obsession
with the behaviour of pregnant women and new mothers, or with
the psychological development of children and the ways in
which parents and children interact. There is a growing sense
that there is a conflict of interest between parents and their
children; and that left to their own devices, parents will
exercise their own wishes to the detriment of the child.
In this representation of
the parent-child relationship, the child appears as the icon
of today's culture of vulnerability. In the very fact of exerting
their power over a vulnerable child, parents can do harm -
whether they mean to or not.
The designer babies debate
is a focused expression of society's concern with children's
vulnerability and the 'problem' of parental power. Cases like
that of the Hashmis are clear examples of parents who are
explicitly aiming to make decisions for themselves about how
their children should be. In this instance, concern is balanced
by the fact that without treatment, their son will die.
But in instances where things
are less clear-cut, such balance diminishes. There is an idea
that if people who are in less dramatic circumstances are
allowed to have children who are born to provide tissue that
could treat an existing child, then it may to end in tears.
Somehow the process through which a parent makes a decision
about what the child is for is considered likely to lead to
And where it is more simply
the case that a parent might wish to make a choice about their
future child - for example, choosing the sex of a child -
balance almost entirely disappears. This kind of possibility
is guaranteed to elicit a very negative response. The concern
is not so much with the particular decision parents might
make, but with the fact that they can make such decisions
The inflated problem of parental
power and decision-making is linked to an inflated sense of
the importance of personal identity. When it comes to new
reproductive technologies, there are two areas in which the
concern about identity is particularly strong. One is the
discussion in the UK of donor sperm, and the demand made by
the children born this way that they need to know the identity
of the sperm donor. As long as donors are anonymous, it is
argued, I cannot know who I am. In this sense, the actions
of others - donors who wish to remain anonymous, or those
who argue that donors should always be anonymous - come to
be seen as depriving the individual of his or her identity.
This is also the key theme
in debates about disability and genetic screening. Given the
reality of PGD and the way it is used, it is difficult for
critics to attack the technique its future possibilities for
being eugenic in old-fashioned sense: a kind of state-sponsored
scheme designed to create superior race.
A more powerful argument is
that PGD, and the techniques and issues that arise from it,
damage the sense of self-worth and identity of disabled people
that are already born. The argument goes that the fewer deaf
people who are born, the less valued those deaf people who
already exist are bound to feel. The actions taken by those
who choose to screen to avoid affected pregnancies are taken
as an assault on what it means to be a disabled person.
According to this argument,
the individual's identity is made vulnerable by the actions
of others. Their failure to recognise the value of the disability,
by opting to use genetic screening to have an able-bodied
child themselves, damages the disabled individual. Human beings
are presented as so vulnerable that their identity can be
damaged by actions of people with whom they have no direct
relationship at all; and, it is argued, their feelings about
this must be taken into account when the morality of the actions
of others are assessed. So the consideration of how some disabled
people feel comes to be a factor that should be taken into
account when decisions are made about whether a couple should
screen a pregnancy.
Running through the debates
about designer babies, from disability to sex selection to
'designing' a baby to treat a sick sibling, is a deep mistrust
of individuals. It is assumed that, in making certain choices
about their children, parents will somehow harm the sense
of identity and self-worth of their own children, or of others
in society. But surely parents are far better placed to make
decisions about their children than any court or ethics committee?
And what are the consequences of preventing them from making
The elevation of notions of
human vulnerability that the discussion of reproductive technology
brings to light generates a number of real, and immediate,
problems for society today.
The most obvious problems
face those individuals who want to use reproductive technology
for particular reasons. Take the Whittaker family - who, unlike
the Hashmis, were prevented by the HFEA from using PGD to
give birth to a child who could save the life of the child
they already had. That our culture can countenance this seems
astounding. Our fearful society, it seems, is more prepared
to let these families see their children suffer than to allow
them to make use of new techniques.
Such cases indicate a worrying
value shift, in which we have become unable to be convinced
by the notion that it is morally good to be able to prevent
disease. Surely, in the twenty-first century, we should be
able to express confidence in the notion that it is better
to be free from illness than to suffer from it.
Beyond the consequences for
individuals' health, the culture of vulnerability has other
damaging consequences. This culture courts distrust of other
people: making us suspicious of others and their motivations
for action, and setting us against each other. This is striking
in discussions about reproductive technologies, which increasingly
revolve around people's supposed feelings and motivations
in relation to their private lives.
Of course, what happens to
children generally is of public interest. For example, this
is why we all contribute towards financing the education system.
But the problem at the moment is that our culture is generating
a peculiarly individualised and narrow account of what the
social or public interest in children might be.
We are encouraged to focus
our attentions on how individual parents relate to their children;
how they think about them, and what their feelings and motivations
might be for choosing to relate to their children (already
born or not) in one way or another. So in all debates about
'designer babies', we are encouraged to consider: why would
such and such an individual want to do this or that? Can this
be justified? Can the rest of us empathise with it or not?
Take a case like that of the
Mastersons - often presented as a controversial case study
in the ethics of sex selection. The Mastersons have sons,
but their only daughter died. They want to use sex selection
have another daughter. The kind of discussion we inevitably
have is: what could be going through these people's minds?
Surely if they are so desperate to have a daughter, they will
put her under great pressure to be like the daughter they
have lost? This must damage her? Before you know it, the non-existent
Masterson baby is presented as an emotionally abused child.
There is something disturbing
about a culture that is encouraging us to peer inside other
people's minds and comment on their emotional and psychological
state. We may well disagree with what the Mastersons' want
to do - but what business is it of ours? And, more to the
point, what business is it of the courts and committees? Because
the consequence of this kind of discussion is to take such
decisions out of our hands, and to make personal reproductive
choices the property of the state.
Different ethical committees
and influential lobby groups are attempting to influence the
way we think and act, particularly in relation to private
life and matters of an emotional nature. They are doing this
to some effect. PGD remains limited in its application and
development, while the whole area of pregnancy and decision-making
about pregnancy has come to be the business of others. Meanwhile,
the Whittakers, the Hashmis and the Mastersons find their
choices scrutinised by ethics committees, the media and the
courts. The current response to the culture of vulnerability,
expressed through the 'designer babies' debate, is one that
is undermining what we can call our moral autonomy, that is
our sense of our ability to make judgments for ourselves.
If anything, this will make us more vulnerable, less sure
of what we think, and less able to be clear about what is
the best way to act.
The state of the debate
These problems are infrequently
confronted. Instead, those who are open to possibilities and
sympathetic to science and to reproductive technology tend
to hide behind idea of regulation. Reproductive technologies
are legitimised on the one hand - the HFEA thus regulates
and approves them as part of medical care - but those who
agree they should be available uphold the existing regulatory
framework as bulwark against critics of innovations and trends
that encourage fear about new developments.
Instead of defending new techniques
or encouraging an open debate about them, many claim that
existing legislation are sufficient to make sure 'designer
babies' do not happen. So while the HFEA decided in the end
that the Hashmis could use PGD, it has gone to great lengths
to reassure 'the public' that the 'floodgates' will not be
opened for others to make such choices about their offspring.
The Hashmi case is a 'legitimate' use of PGD, argues Suzi
Leather, the HFEA chair, making it clear that those in other
situations may find that their requests are turned down.
Perhaps the HFEA really does
believe that it is in a better position than potential parents
to decide whether a child should be born to them. Sara Nathan
claims that the HFEA is very concerned that 'embryos are not
created lightly' or 'abused and destroyed wantonly', suggesting
a rather disparaging attitude towards those who seek, and
those who provide, treatment.
Others, too, make the case
for regulation. Simon Fischel is the clinician who treated
the Hashmis. He has been a strong advocate for them throughout.
Following the recent High Court decision in the Hashmis' favour,
Fischel stated: 'From the public's point of view they should
have no fear because cases such as the Hashmis and the procedures
they involve will remain highly regulated
conditions will apply to all couples seeking treatment.'
This may sounds plausible
as pragmatic response to those groups like CORE, which make
much noise about the unethical nature of techniques like PGD.
Those who are supportive of techniques in this area may be
right that, by taking this approach, it will be possible to
deflect claims that we are on a 'slippery slope' to 'designer
babies', and keep a lot available for people in practice.
But the failure to engage in a robust debate about the issues
that make people fear reproductive technologies will ensure
that problems pertain.
The Hashmi case should show
us that society has now given far too much ground to so-called
'public fears'. This case shows that there is too much scrutiny
by regulators of people's lives and choices. Taking 'public
fears' so seriously, and championing regulation as the answer,
will ensure that we continue to have a climate of ambivalence
about these technologies and their future. As long as regulation
is seen as the solution, it will still be the critics of innovation
who are setting the agenda - and the authorities who are taking
personal choices out of our hands.
Ellie Lee is the co-ordinator
of Pro Choice Forum and editor of Designer Babies: Where
Should We Draw The Line? (buy
this book from Amazon UK).