In a context of confusion and flashy journalism, rigour becomes a precious value.
Dr Calum MacKellar considers the ethics of the editing of human genes in the creation of embryos
The word “eugenics”, which is derived from two Greek roots “eu” (good) and “genesis” (birth), describes selection strategies or decisions aimed at affecting, in ways which are considered to be positive, the genetic heritage of a child, a community or humanity in general.1
It was the Englishman, Sir Francis Galton, who coined the term “eugenics” in 1883, as he sought to implement into human beings selection procedures for inherited characteristics which had already been used with success in animal breeding programmes.
At the beginning of the 20th century, eugenic ideas were actually being considered by many prominent people, such as Theodore Roosevelt who became United States President in 1913.
Sir Winston Churchill, wartime Prime Minister of the United Kingdom, was openly disappointed when Britain resisted eugenic action on the grounds of civil liberties. In 1910, he wrote to the then-British Prime Minister, Herbert Asquith, expressing his support for legislation that proposed to introduce a compulsory sterilisation program in the UK, saying: “The unnatural and increasingly rapid growth of the feeble-minded and insane classes, coupled as it is with a steady restriction among the thrifty, energetic and superior stocks, constitutes a national and race danger which it is impossible to exaggerate … I feel that the source from which the stream of madness is fed should be cut off and sealed up before another year has passed.”2
It was only because a deep aversion towards the atrocities implemented by Nazi Germany, that eugenic ideology was put on hold for so many years. But with the consequences of such abuse now becoming an ever-fading memory, pressure is now returning for a new eugenics. For example, American Nobel Prize laureate and co-discoverer of the structure of the DNA molecule, James Watson, wrote in 1995: “But diabolical as Hitler was, and I don't want to minimise the evil he perpetuated using false genetic arguments, we should not be held hostage to his awful past. For the genetic dice will continue to inflict cruel fates on all too many individuals and their families who do not deserve this damnation. Decency demands that someone must rescue them from genetic hells. If we don't play God, who will?”3
Even as recently as 2015, a headline in the UK Daily Telegraph newspaper stated that: “Eugenics need not be a dirty word - instead, it could be lifesaving technology.”4
This push towards a new eugenics is also being encouraged in the UK by the acceptance, in 2015, of gene-editing procedures in human embryos for research5 whereby specific variants of genes are edited by removing or inserting genetic material into cells.
It is true that not all gene-editing procedures are eugenic in nature. For example, if the editing takes place on a mature embryo in order to address a genetic disorder, this can only be seen as a positive development. Such applications would not raise many new significant ethical problems, apart from safety.
But if a genetic modification takes place either (1) on the sperm and egg cells before they are used or (2) during fertilisation, such as in the formation of a one-cell embryo,6 a new individual who would not otherwise have existed, is being created. This has a clear eugenic element since a new individual would exist and not another (who may for example have had a genetic disorder). What is being proposed, therefore, is not a form of therapy.
No existing person is being treated or cured for a disorder. Instead, it is making sure that certain persons are not brought into existence. This is because any individual brought into existence through these procedures would be a very different person from the one who would, otherwise, have existed with the genetic disorder.7
Of course, it is possible to ask what is ethically wrong in making sure that only healthy and not disabled children are brought into existence. Why not make sure that children who will have a short and difficult life of suffering are not brought into existence, especially if it becomes possible to undertake such a procedure without the destruction of any embryos?
In response to these questions, it must be recognised that it is difficult to see how parents can decide not to have certain kinds of children, without making a judgment that some children are less desirable.8 It follows, that when parents make a decision that only a certain kind of child should be brought into existence, based solely on genetics factors, this can only mean making a eugenic choice and preferring one child over another. In other words, this decision contradicts the important principle that the lives of all human beings have the same worth and value, regardless of their state of health.9
Indeed, if “all human beings are born free and equal in dignity”, as stipulated in Article 1 of the UN’s Universal Declaration of Human Rights10, how can a choice between two supposedly equal future persons be made?
Suggesting that choice should be available to make sure that certain kinds of children are not brought into existence, may also mean that there is such a thing as a “life unworthy of life” in society.11 As the international legal ethicist Roberto Andorno explains: “In reality, eugenic ideology presupposes stepping from a ‘worthiness of life’ culture to a ‘quality of life' culture. In other words, to the idea that not every life is worthy of being lived, or to put it more bluntly, that there are some lives that do not have any worth.”12
It is impossible not to have much sympathy for parents who have children affected by severe disability and suffering. Moreover, the despair and desolation of parents whose children have died because of a genetic disorder is profound and long lasting. But, when talking to these parents, it is always the disorder and not the very existence of the child that has been the cause of so much heartache. Moreover, none of the parents say they would have wanted to exchange their child for another, healthier one.
But if intentional eugenic selection through gene editing was made possible, it would in the words of the 2015 United Nations Educational, Scientific and Cultural Organisation’s Bioethics Committee,“jeopardise the inherent and therefore equal dignity of all human beings and renew eugenics, disguised as the fulfilment of the wish for a better, improved life.”13
Moreover, if parents decide to avoid having a child affected by a serious genetic disorder, the indirect message given to persons who have already been born with the same disorder is that they should also not have existed. This is clearly discriminatory and would undermine the inherent equality of all human persons.
Because of this, it is unfortunate that the UK has decided to ignore the lessons of history in its acceptance of eugenic genetic editing of early human embryos, which undermines its reputation as a responsible civilised state.
It is also extremely regrettable that it is continuing its solitary path in Europe of disregarding international law on the matter, such as the EU Charter of Fundamental Rights which asserts in Article 3 that, “In the fields of medicine and biology ... the prohibition of eugenic practices, in particular those aiming at the selection of persons” 14, must be respected.
Dr Calum MacKellar is Director of Research, Scottish Council on Human Bioethics. As well as being a member of a UK National Health Service Research Ethics Committee in Edinburgh, he is a Fellow with The Center for Bioethics & Human Dignity. Since 2010 he has also been a Visiting Lecturer and Visiting Professor in bioethics at St Mary’s University in London.
1 Calum MacKellar and Christopher Bechtel, 2014, The Ethics of the New Eugenics, New York – Oxford: Berghahn Books.
2 Quoted in M. Lind. 2004. “Churchill for Dummies”, The Spectator, 24 April.
3 J. Watson. 1995. “Values from Chicago Upbringing” in D.A. Chambers DNA (ed), The Double Helix Perspective and Prospective at Forty Years, New York: New York Academy of Science, 1995, 197.
4 Madhumita Murgia, The Telegraph, 26 October 2015, http://www.telegraph.co.uk/technology/news/11956083/Eugenics-isnt-a-dirty-word.-Instead-could-be-lifesaving-technology.html (Accessed on 1 May 2016)
5 Such as the use of clustered regularly interspaced short palindromic repeats with the Cas 9 protein. i.e. the CRISPR/Cas 9 system
6 Pronuclear zygotes are not considered to be embryos in certain European legislations such as in Germany.
7 Derek Parfit. “Rights, Interests and Possible People”. In S. Gorovitz et al (ed) Moral Problems in Medicine, p. 369-375. Prentice Hall, 1 July 1976
8 It should be noted that a decision not to have a certain kind of child might also be based on other factors, such as a genuine psychological, financial and material inability by some parents to cope with a seriously disabled child. Such a decision would not then be eugenic in nature.
9 Roberto Andorno, Fondements philosophiques et culturels de l’eugénisme sélectif, 2010, In : J. Laffitte, I. Carrasco de Paula (dir.), La génétique, au risque de l’eugénisme? Paris, Edifa-Mame, p. 129-141.
10 United Nations’ Universal Declaration of Human Rights (1948), http://www.un.org/en/documents/udhr/index.shtml#atop (Accessed on 7 April 2011)
11 The term a “life unworthy of life” (in German “Lebensunwertes Leben”) first occurred in the title of a book by German psychiatrist Alfred Hoche and lawyer Karl Binding, Die Freigabe der Vernichtung Lebensunwerten Lebens, Verlag von Felix Meiner in Leipzig, 1920.
12 Roberto Andorno, Fondements philosophiques et culturels de l’eugénisme sélectif, In : J. Laffitte, I. Carrasco de Paula (dir.), La génétique, au risque de l’eugénisme? Paris, Edifa-Mame, 2010, p. 129-141 (my translation).
13 UNESCO International Bioethics Committee Report: http://unesdoc.unesco.org/images/0023/002332/233258E.pdf (Accessed on 1 May 2016)
14 Charter of Fundamental Rights of the European Union (Proclaimed in Nice on 7 December 2000) http://www.europarl.europa.eu/charter/pdf/text_en.pdf (Accessed on 7 April 2011).