Decisions about genetic selection should be left to parents, not panels of experts.
Parents who select the genetic characteristics of their babies are often accused of having ‘designer babies’ – a term associated with eugenics, greed, vanity and the commodification of children (1).
But when I spoke to some of the people who have had children in this way, I found they were loving and caring parents. Why do we mistrust them so much with their own children?
Parents who want to have some say in the genetic make-up of their baby are criticised for using science for immoral ends. In the UK, such criticisms were raised on 22 February 2002 when the Human Fertilisation and Embryology Authority (HFEA) allowed a clinic to help Raj and Shahana Hashmi to screen embryos before implantation to ensure that their next baby is a genetic match for their three-year-old son Zain, who suffers from a rare blood disorder (2). The Hashmis plan to use stem cells from the newborn to regenerate Zain’s bone marrow tissue, which could save his life.
In 2000, an American couple was allowed by the American health authorities to create a baby to act as a tissue donor to save his sister from a life-threatening disease. Baby Adam Nash was born free of the illness Fanconi anaemia, and turned out to be a perfect tissue match for his sister Molly (3).
Yet according to Peter Garrett, director of research at the anti-abortion group LIFE, the manufacture of a child’s life ‘on the condition that he or she can supply bone marrow for an older brother’ is unethical (4). Dr Michael Jarmulowicz, Master of the Guild of Catholic Doctors, says: ’All children should be born for their own sake, not as a purpose for someone else’s benefit.’ And David King, coordinator of Human Genetics Alert, accused those who use preimplantation genetic diagnosis (PGD) – the genetic testing of an embryo prior to implantation in the uterus – of creating ‘a child to order’ (5).
But surely all children are born for ‘someone else’s benefit’ – that is, their parents’? By and large, people have children because they want them, not for the sake of the future child.
What the critics of PGD have in common is that both support the idea that a higher authority, and not parents, should make such decisions about children’s health – even though it is the parents who will have to live with the consequences.
The Hashmis’ decision was not an easy one to make. The shock-headline of a ‘made-to-order child’ implies that you simply pay some money and avoid the hard labour that nature intended. But the Hashmis’ struggle with technology (not to mention the regulators) to defeat nature has been going on for years – and it is still going on now, after the HFEA’s decision.
Even if Shahana Hashmi gives birth to a healthy baby, Zain may be too old to benefit from the stem-cell treatment. After nine months of agonising wait, he may need a bone marrow transplant from his baby brother or sister. But this is the family’s decision. It is their way of caring for their child and there is no reason to believe that they won’t love their baby girl or boy born using PGD any less than they love Zain.
Parents who want to use the technology for non-medical reasons are also criticised. Dr Evan Harris, UK Liberal Democrat health spokesman, warns that, ‘It is important that designer babies are not allowed to be created for social reasons’ (6). According to Vivienne Nathanson, head of ethics and policy at the British Medical Association, embryos must be selected for ‘the right reasons’ (7).
But who is to say what social reasons are acceptable for a parent to bear a child? Does a person’s sexuality determine whether they will be a good parent? (8) What if a surrogate mother is used? (9) Is it okay to have a baby after failed contraception? What about those who continue pregnancies that result from a drunken night out, without knowing who the father is? What if a woman has a child because her husband is anti-abortion?
Even if parents’ rationale for using PGD does not fit other people’s views, what’s wrong with mum and dad deciding that their family needs twins, two boys, a baby girl, a child with disease-free stem cells? Parents, not regulatory bodies, are best placed to decide what family they want.
Take Alan Masterton, a 44-year-old father of four sons who lives in Dundee, Scotland, and who is willing to campaign until ‘the day I die’ for the right to select an embryo’s sex using PGD. A few years ago, his daughter Nicole died in an accident – but the HFEA ruled against his application to have the rules changed so that his family could select the sex of their next child and ensure it was a girl. ‘Nicole is irreplaceable’, he told me. ‘But it would heal my family if we could replace the female element that is lost.’
If the Mastertons stopped the hard work of pushing for HFEA regulatory changes and instead adopted a baby girl, they wouldn’t get so much grief about their family desires. But when technology is involved, the discussion gets far more heated.
When I describe to friends how they might choose some of the genetic characteristics of their babies, some are horrified. ‘The lengths to which some parents go to have a baby when nature says they can’t is pure vanity’, said one. Another argued, ‘It should be illegal. Parents are parents not because the baby looks like them but because the baby is parented by them’.
Many others would agree – including religious groups, those involved in the regulation of genetic technology, and some on the left, who fear that if genetic selection is allowed to stop the inheritance of disease, it won’t be long before it’s used to select blue-eyed and blonde babies.
In fact, it is not possible to select eye colour or intelligence using PGD. The ‘blue-eyed baby’ notion is guaranteed to generate a shrill debate around a hypothetical concern, which is rarely helpful. It is, however, already legal in Britain to select the racial characteristics of donor sperm and eggs – and one fertility expert told me that he impregnated a woman with the sperm of her infertile husband’s brother, so that the baby would look like a member of the family.
But so what if infertile Asian parents want to select an Asian egg or sperm, or if a blue-eyed, blonde-haired infertile woman wants similar features in her newborn? These are hardly demands for a Frankenstein-type monster. I have spoken to couples who chose donor gametes with particular racial characteristics, and I didn’t come away with the word ‘Nazi’ in my head. Given a choice (and often it is very limited), some parents opt for the kind of colourings their child would have had anyway, if it had been born without medical assistance.
It isn’t surprising that fears about genetic selection exist, considering the horror-movie images conjured up by the possibilities of biotechnology. Strange visions of the future, in which all the world’s embryos are manipulated Brave New World-style in petri dishes to single out the tall from the small and the blue-eyed from the hazel-eyed, repulses many people. But this nightmare scenario of future society should not be confused with today’s reality, of a few parents wanting the best for their families.
The big problem with human genetics is not the way parents might want to use those technological advances that do exist. It is the inhumane view that those who want to use such technology do not know what is in the best interest of their child.
If my mum and dad had chosen my genetic characteristics from an embryo in a test-tube so that I wouldn’t get Alzheimer’s or to ensure I had similar facial colouring to them, would I think of them as Nazis?
Tessa Mayes contributes to The Sunday Times (London).
(1) ‘Designer baby’ ethics fear, BBC News, 4 October 2000
(2) ‘Six couples in queue for designer babies’, Sunday Times, 24 February 2002
(3) ‘Designer baby’ ethics fear, BBC News, 4 October 2000
(4) ‘Couple ask permission to create ‘designer baby’, PAW agency, 22 February
(5) ‘Designer baby’ ethics fear, BBC News, 4 October 2000
(6) A Design for life, BBC News, 4 October 2000
(7) ‘Designer baby’ ethics fear, BBC News, 4 October 2000
(8) ‘Gay couples join forces to have babies as foursomes’, Tessa Mayes and Rosie Waterhouse, Sunday Times, 17 June 2001
(9) ‘Social Surrogacy – wombs for rent’, Tessa Mayes, Sunday Times, 8 July, 2001
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