For those who think that eugenics is safely consigned to the history books, please read on. Or those who think that Gattaca was just a science fiction film, with the emphasis on fiction, read on now.
Our concern at CMF with the growing eugenic mindset in the UK has been well covered by several CMF blogs over the last year, and again today, but a fascinating journal article was brought to my attention last week which I think deserves wider readership and some commentary. This journal article avoids any comment on ethics or morality but simply builds a case to argue that parents, technology and money are already driving us towards a new era of eugenics.
The author, Professor Armand Leroi, of Imperial College London, told a major science conference in Dublin that the falling cost of DNA testing means that couples can increasingly use IVF to weed out babies with incurable diseases. He says it is unlikely that people will have the ‘luxury’ of using technology to design babies by intellect or eye colour and instead the focus will be on stopping genetic diseases by weeding them out as embryos. He said that the cost of genetic sequencing is falling so rapidly that ‘it is going to become very, very accessible, very, very soon’.
Professor Leroi says that eugenics is already here, with tens of thousands of unborn babies with Down’s syndrome and other illnesses being aborted every year. Indeed, just a week after his talk, the Mail reports that dozens of babies are being aborted after IVF, because they have Down’s syndrome.
Is Leroi’s claim – that eugenics is with us – just scaremongering? What is new about his argument, if anything? Can we take it with a pinch of salt?
This is where his journal article comes in. In 2006 Leroi had a paper published in the journal EMBO (EMBO is one of the most influential molecular biology journals, and is part of the Nature Publishing Group) explaining why he expects neo-eugenics to rapidly spread. His argument was based on falling costs, new technology and a pervasive eugenic mindset amongst parents in industrialised countries.
It is a very persuasive article, and very disturbing too.
In the UK, over 95% of all babies found to have Down’s syndrome before birth are aborted. Many people now openly approve the elimination of ‘genetically defective’ fetuses. As Peter Saunders highlights in this blog, not only are many women who have IVF aborting Down’s syndrome babies, a majority of responses posted online to this news, and the reaction of readers to them, strongly support this trend, reflecting a disturbing and growing intolerance toward disability in our society.
Leroi comments: ‘These abortions are eugenic in both intention and effect—that is, their purpose is to eliminate a genetically defective fetus and thus allow for a genetically superior child in a subsequent pregnancy.’
He admits this is a harsh way of saying that parents, naturally, ‘just want to have healthy children’. Nevertheless, however phrased, the conclusion is starkly unavoidable: terminating the pregnancy of a genetically defective fetus is widespread. And it is not happening under any coercion. Instead, these abortions, numbering thousands each year, are carried out at the request of the parents.
The widespread moral acceptance of abortion as a eugenic practice therefore suggests that there will be little resistance to more sophisticated methods of eugenic selection and, in general, this has been the case.
At the moment, cost precludes the widespread screening of women who are not considered to be at high risk of having a genetically defective fetus.
However Leroi’s main point is that technological and financial obstacles to widespread screening will come down.
Since his article was originally published in 2006, there have indeed been significant advances in both the cost and technological effectiveness of prenatal screening and the ability to detect increasing numbers of known disease-causing mutations through less invasive means than amniocentesis.
As well as improved prenatal diagnosis, Leroi claims that pre-implantation genetic diagnosis (PGD) will become far more common, and that that the difficulties with using PGD (expense, inconvenience and limited application) are exaggerated.
‘A course of IVF in the UK costs between £7,000 and £10,000 – expensive, but cheaper than a mid-range car, and trivial compared with the costs of raising a child with special needs. Conception rates using IVF are generally lower compared with the old-fashioned method, but that is because many of the women who undergo IVF are relatively old. For women under 35 who have no fertility problems, the success rate per cycle is greater than 50%, which is comparable to natural monthly conception rates. However, perhaps the most important evidence against the idea that IVF – and PGD – will not catch on is the observation that it already has. At present, about 1% of Americans are conceived using IVF, and each year 4% of Danes start their life in a petri dish. It seems possible that if the cost of IVF decreases further and the number of PGD screens expands, an increasing number of parents will choose not to subject their children to the vicissitudes of natural conception and the risk of severe genetic disease.’
Leroi’s final point is that the ultimate decider will be balance sheets and the economic costs and benefits of screening versus raising disabled children.
In the US a child who is mentally disabled, he estimates, will cost the US economy $1 million over the course of his or her life. This does not include the social and emotional cost that parents assume in raising a mentally disabled child, which all but defy quantification. In this context, eugenic screening offers significant economic savings.
‘Will neo-eugenics spread? Probably. At least it is hard to see what will stop it if, as I claim, it becomes possible to detect all known disease-causing mutations before birth or implantation, if the cost of IVF and PGD declines, and if eugenic screens have clear economic benefits.’
On this conclusion, the Gattaca future looks less and less far fetched. Society’s eugenic mindset and increasing obsession with celebrity status, physical perfection and high intelligence all fuels the view that the lives of people with disabilities or genetic diseases are somehow less worth living.
Although many in society perceive disabled children as an extra burden, in fact, divorce rates and unhappiness are no more common in families with disabled children than in those with healthy children. Research with Down’s syndrome children, and their families, published in the American Journal of Medical Genetics found that over three-quarters of parents with a Down’s syndrome child had a more positive outlook on life and almost 90% of siblings said they considered themselves better people because of their family member with Down’s syndrome. Overwhelmingly, parents and siblings reported loving, and having pride in, their family member with Down’s syndrome. As one parents of a Down’s syndrome child says: I’ve learned that a person’s worth is not measured by an IQ score.”
Like the painful grit in the oyster that causes a beautiful pearl to form, caring for a child with special needs often strengthens relational bonds and encourages caring and spiritual growth.
So the reason for yet another blog on this issue is to re-iterate the need for us to recognise and resist the eugenic mind-set. The way we treat and value the most vulnerable members of our community speaks volumes about the sort of society that we are. Of course the costs, both financial and emotional, of caring for a handicapped child cannot be ignored. But neither can the biblical command: ‘Bear one another’s burdens, and so fulfill the law of Christ.’ (Gal 6:2)