May 5, 2014, by Brigitte Nerlich
Designer babies: Are we reaching the end of the slippery slope?
A decade and a half ago Ruth Deech, then Chair of the Human Fertilisation and Embryology Authority, said: “The public do not like, and we do not like the idea of designer babies” (quoted in The Independent, 18 October, 2000). That same year, John Harris, Sir David Alliance Professor of Bioethics at the University of Manchester, quipped in an interview with one of our former students, Susan Johnson: “We are all on the slippery slope – the question we should be asking is: skis or crampons”.
The first designer baby
These pronouncements were made in the context of a first wave of debates about ‘designer’ babies triggered by the birth of Adam Nash on 29 August 2000 in the United States. Adam had been chosen as a donor for his sister Molly, who suffered with Fanconi Anaemia, which is a rare genetic disease. Without a bone marrow transplant, Molly would have died before the age of 10. A suitable donor had not been found, so her parents decided to undergo in vitro fertilisation (IVF), and preimplantation genetic diagnosis (PGD) to select an embryo that would not carry the disease-causing gene and would become a brother and a donor for Molly. At the time of his birth, Adam’s cord blood was collected and later transplanted into his sister. He was called the first ‘saviour sibling’ or less emotionally the first ‘donor baby’ but also the first ‘designer baby’
Lord Winston speaks out
A few days ago, on 2 May 2014 Lord Winston, pioneer of both IVF and PGD, gave a key note lecture at the Annual Meeting of the Preimplantion Genetic Diagnosis International Society held at he University of Kent, Canterbury. It was entitled “Reflections on IVF technology – will we be human in 100 years?” The main points of the speech were reported in the Daily Mail on 4 May (and in many other newspapers). He “feared a time when the rich could alter the appearance and ability of children by tinkering with their genes” and warned of a possible resurgence of eugenics. He claimed that “there was a ‘real risk that we could see that kind of attitude in our humanity occurring again’.
Designer baby debates: 2000 and 2014
Some of these claims are quite similar to the fears expressed a decade and more ago when the first designer baby was born. At that time, that is in the year 2000, the geneticist and (like Lord Winston) media personality Lee Silver, surmised in a BBC Horizon programme that ‘[d]esigner babies actually cause a future that is much more horrible than anything that Huxley could have imagined in his book Brave New World because it’s going to increase the gap between the [genetic] haves and the have-nots’. He argued that the rich would be able to afford designer babies, just as they are able to afford designer clothes, whereas the poor would only be able to afford normally conceived and may be ‘defective’ babies.
In a study of the media coverage of the birth of Adam Nash published in 2003, we found that in contrast with Silver only very few journalists and commentators, mainly from the tabloids, argued at the time that a brave-new-world type dystopian future was around the corner or at the end of the slippery slope – a phrase used throughout the press. Many of the broadsheet journalists and commentators argued that as long as IVF, PGD, and gene selection were as difficult and physically and emotionally exhausting as they still are, only a small number of people would engage in any one or a combination of these genetic procedures just to add a new colour to the eyes of their off-spring. They claimed that most people would only use these procedures in extreme medical circumstances.
Such arguments were still being used in response to Lord Winston’s recent pronouncements, for example by Susan Seenan, chief executive of support group Infertility Network UK and Dr Allan Pacey, the chairman of the British Fertility Society, both quoted in the Daily Mail (and other newspapers). Dr Pacey “said he doubts we will ever have the skill to alter complex traits such as musical ability. He added: ‘The law prohibits it, even if it was technically possible. ‘Most infertile couples are desperate for a baby, rather than a specific type of baby, and I don’t see that changing.’” According to the Human Fertilisation and Embryology Authority, “selecting embryos based on the personal/aesthetic qualities desired for a child, is illegal”.
Keeping the crampons ready
So where are we on the slippery slope to a dystopian future, a ‘Brave New World’, where designer babies are not only possible but perhaps seen as necessary and where they are created not out of love and care but as a means to individual and even collective ends?
Are we any closer to a world of designer babies than we were 14 years ago? Scientifically and medically perhaps slightly, but legally and morally not yet. But given the dangers posed by a changing world (Lord Winston speaks of “‘a world where there is conflict, where there is shortage of resources, shortage of water, shortage of food, climate change’”), would it be beneficial to draw a line in the sand and say, this far and no further, as Lord Winston tries to do?
It seems to me that line drawing itself may not resolve the fundamental problems associated with issues such as donor or designer babies, PGD, tissue typing or sex selection. A line that is drawn for whatever ethical, legal or medical reason implicitly legitimises practices that lie before the line and stigmatises practices that lie beyond it. In this way line drawing shapes public perception of what is ethically, legally or medically acceptable and unacceptable, while being influenced itself by changes in public perception and by public and media pressure. This means the line will move (and in some instance, such as sex selection has moved already).
However, as far as I can tell, the line hasn’t moved very fast and very far over the last decade and a half and that might be good news. The end of the slippery slope may still be some way off in terms of creating designer babies for human enhancement or for eugenic purposes. This does not mean however that we don’t need to keep an eye on the line and the slope. We have not yet reached a point of no turn, but we have to keep our ‘crampons’ ready (especially if we want to engage in ‘responsive research‘ and ‘responsible research and innovation‘).
PS I overlooked one IVF pioneer in my work on designer babies, namely Jacques Testard. Here is a (French) article he wrote this month (May 2014) on the dangers of designer babies. Thanks to Christian Munthe for pointing him out to me.
Image: Judean hills by David Shankbone, Wikimedia Commons