HGA comments on Nuffield Council report on mitochondrial disease prevention techniques
Human Genetics Alert, June 12 2012

*Nuffield Council report ignores real issues

*Just one step to go to GM babies

Commenting on today's report by the Nuffield Council for Bioethics, Dr David King, Director of Human Genetics Alert (1), said: "The proposed techniques are both unnecessary, and highly dangerous in the medium term, since they set a precedent for allowing the creation of genetically modified designer babies.  But these considerations are ignored by the bioethics industry because of its flawed methodology and in its usual rush to embrace risky hi-tech 'solutions'."

"The techniques are unnecessary, and research on them is a waste of taxpayers money because safe and effective technique already exists.  Transmission of mitochondrial conditions can be avoided with 100% certainty (which cannot be provided by the proposed techniques) using standard egg donation.  Thus the only justification for these new techniques is that the mother wishes to be a genetic parent.  But the highly invasive manipulations of embryos create significant risks to the child (2).  Those risks can never be eliminated through testing embryos, so the scientists will always be gambling with the health of the children born through these techniques.  Taking such risks can only be justified if there is no other way of avoiding the condition, and certainly not merely by the mother's wish to be a genetic parent.  This is a simple piece of basic medical ethics, which the bioethicists simply ignore because it is inconvenient."

"The Nuffield Council admit that the techniques constitute a form of germline manipulation and thereby cross what is normally considered the most important ethical line in the prevention of a new eugenics.  They also admit that they have not considered the wider ethical and social consequences of doing so. This is precisely how slippery slopes get created, by considering each step only in the most narrowly-defined context.  In fact, permitting the creation of genetically modified babies is not several steps down the line, but only one: because of the way that the 2009 Human Fertilisation and Embryology Act is drafted, if the Secretary of State for Health makes regulations to permit this technique s/he will also be legalising the genetic modification of nuclear genes that lead to mitochondrial disorders (3). This would happen with essentially no Parliamentary debate. No doubt when that happens the Nuffield Council for Bioethics will throw up its hands and protest that it is not their fault."

On the issue of  'three-parent babies', Dr King commented, "Here again, by dealing only those concerns defined as 'rational' within the discourse of bioethics, the Council guarantees the usual approval of new techniques and the sweeping aside of the public's real concerns.  What worries most people about constructing a person in this way is the same thing that worries them about GM foods or human animal hybrids: the way that scientists treat nature as a set of infinitely exchangeable parts to be mixed and matched as necessary.    Just as Frankenstein's creation was produced by sticking together bits from many different bodies, it seems that there is no grotesquerie, no violation of the norms of nature or human culture at which scientists and their bioethical helpers will balk. But such concerns cannot be admitted as real within the discourse of bioethics and can certainly never overcome its trump cards of 'medical progress' or simply 'increasing knowledge'."

Notes for editors

1. Human Genetics Alert is an independent watchdog group that supports abortion rights.

2. These risks are not conjectural.  There is already concrete experience of the risks of such invasive manipulation of embryos, notably with the cloning of animals. In the USA attempts to apply less invasive versions of the technique, which only transferred healthy mitochondria between eggs, rather than the nucleus, had to be stopped by the Food and Drug Administration due to serious health effects upon the children created.

3. The HFE Act 2008 contains rules which effectively prohibit genetic modification of embryos for treatment purposes (Section 3ZA(2)).    This is qualified by a power of the Secretary of State for Health to make regulations to allow the creation of an embryo whose nuclear or mitochondrial DNA has been altered if the purpose is to treat mitochondrial diseases (Section 3ZA (5)).  Although Human Genetics Alert and the then Liberal Democrat MP, Evan Harris, pointed out to the Government during the debates on the Act that this would allow the use of genetic modification to prevent the transmission of mitochondrial diseases originating in nuclear genes, the then Labour government refused to amend the wording.