Debating 'designer babies'
By Ellie Lee
June, 2003

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 with treatment.

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 lives worse.

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 restraints. Why?

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' are entertained.

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.

Parental power

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 damage.

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 at all.

Personal identity

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 these decisions?

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.

Moral autonomy

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….and strict 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).