‘Soon it will be a sin for parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children.’
These are words of Bob Edwards, an embryologist and IVF pioneer which I have been discussing with my daughter, Maddie, as part of her Ethics degree course. We have had many Skype based debates and I have used her words with some of the medical stuff here.
The issue I want to raise here is the issue of Eugenics and the threat that we are moving into an area of real moral dilemma.
Eugenics was a consequence of Darwin’s theories on natural selection becoming accepted. His cousin Sir Francis Galton coined the phrase eugenics in 1883 and by the turn of the century and through to WW2 the eugenics movement was advocated by many, many governments around the world. It was most widely discussed and indeed acted on before WW1.
In the USA over 64,000 people were sterilised as ‘imbeciles’ on the basis that they were unfit to bring up and support a new family. But the USA was not alone: this was a global movement. Of course it culminated in the atrocious activities of Josef Mengele and Nazi Germany.
But eugenics didn’t finish with the war. Sweden sterilised more people than any other European country other than Nazi Germany and between 1934 and 1975 over 62,000 people were sterilised.
But this is the background. There is a good long article on wiki which is my source of statistics: http://en.wikipedia.org/wiki/Eugenics
Eugenics in the 20th century was government sponsored. In the jargon it is known as coercive eugenics. But now we are entering a new world where it is the choice of individual parents (or more likely the to-be-mother) to form an opinion on eugenics. Let me explain.
Prenatal testing can take a variety of forms, from ultrasound scans to amniocentesis, chorionic villus sampling (CVS) or testing foetal cells in the cervical mucus or maternal bloodstream. These tests are carried out at a variety of times throughout the pregnancy to check the development, age and any specific impairments of the foetus.
Preimplantation testing, or preimplantation genetic diagnosis (PGD), is usually coupled with IVF as the woman’s egg is fertilised outside of the body, in vitro. At an early stage of embryo development, there are three types of cells that are available for analysis: polar bodies, blastomere cells and trophectoderm cells. Of these, the common practice is to test a blastomere cell before the embryo divides beyond the 8 cell stage.
Up until this stage, each cell is completely totipotent and is thus, theoretically, able to develop into a complete person. Testing is done at this stage before the association between the blastomere cells becomes too great and before they start to differentiate, thus it ensures embryo development is not inhibited at any point.
The point that medical practitioners make is that these tests are screening for specific illness: ‘Contemporary clinical genetics is aimed at preventing and treating genuine illness, rather than ‘purifying the population’ or eliminating racial and social minorities.’ (Tom Shakespeare)
But we have recently seen a case in the UK where they have been reported screenings for gender. And this is just the start. As the gene mapping projects near completion it is quite clear that in the not very distant future we will be able to screen for attributes as well as illness.
Eugenics will be in the hand of the individual and it starts to pose some really difficult ethical questions:
- Will screening mean a change in the attitude to abortion? I will not get into the ‘pro life’ debate (now) but surely a willingness to screen presumes an acceptance of abortion?
- Will advance screening techniques become a preserve of the richer nations and people? Will that further increase the economic divides?
- What does it say about our attitudes to the disabled? Will it further stigmatize them if there is a feeling that they could have been ‘avoided’?
None of these are pleasant questions to ask and I understand anyone’s reluctance to enter into the debate. Of course we want the best for our child-to-be but is this the way we want our society to develop? It really is an example of the ‘tragedy of the commons’.
When my wife was pregnant we used the amniocentesis test and fortunately we had no unfavourable results. But we had discussed our decisions depending on the result. The new menu of options and decisions is mind-boggling. And it will get longer and longer over the next decades. I am not sure how we would have reacted.
First I will never want to put a lid on science and I will not restrict them. The issue must be education and public debate. However I am not optimistic. As it is increasingly clear that globally parenting is a lost art how do we prepare a new generation of would be parents for the ethical issues that face them?
If Bob Edwards can considers that it is a sin not to test for genetic disease how long before it will be a major misdemeanour not to at least test, if not influence, many other factors?
Are we sleep walking inexplicably from coercive to consumer eugenics?