Human Genetics Alert

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For immediate release November 17th 2012

Human Genetics Alert comments on HFEA consultation on mitochondrial diseases

Responding to today's launch of the HFEA's consultation on mitochondrial diseases, 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. Since there is a safe alternative option in these cases, standard egg donation, the minor benefit of satisfying the mother's wish to be genetically related cannot justify the risks that the techniques create for the child or to society.”

“We are nowhere near understanding the risks to the child from these techniques, and the HFEA's report on this issue is fundamentally flawed (2). Lack of firm evidence that the techniques are unsafe does not constitute evidence that they are safe. In fact there are plenty of reasons for thinking that they may be unsafe. Until much more research has been done, this consultation is premature.”

“In addition to the risks to the child, these techniques across a crucial ethical line in the sand, the modification of the human germ line. Bioethicists and governments have long insisted that modification of the human germ line be banned, because it could allow a new and extremely dangerous form of eugenics. The proposed experiments would be banned in almost every European country except Britain (3). So we are being asked to allow this momentous step just because a small number of people may insist upon being genetically related to their child. That it is even being considered is a reflection of medical consumerism and scientists' fetish for employing the most high-tech methods, even when safe and ethical alternatives are available.”

“The HFEA's presentation of the issue is its usual farrago of half-truths, omission of crucial facts and misleading presentation of arguments. Although it has not gone as far in this case goes to openly state its conclusions (4) or to licence the techniques (5), before the consultation begins, the document is systematically biased to achieved the desired outcome, which is, as ever, to say yes to scientists' demands."

Key distortions in the document.

1. Egg donation: we are not told that mitochondrial disease can be prevented through egg donation, and that many women have done this. Thus, it creates the impression that the manipulations are the only way for women who carry mitochondrial mutations to safely have children. This misrepresentation is crucial in order to set up the usual emotional blackmail that anyone who raises concerns wants to deny parents their only chance of having a healthy baby.

2. Incorrect statistics. The HFEA press release states that 1 in 200 children are born with mitochondrial disease, a vastly inflated figure. Other sources state that the overall incidence is 1 in 4000 to 1 in 8500 (6).

3. Three parent babies: The document carefully avoids using this phrase, which is central to the concerns of many people. Its treatment of the issue focuses purely on the question of the child's identity and fails to address the broader questions. This is an example of the way that the HFEA domesticates issues and so biases the responses that it receives. What worries many 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 violation of the norms of nature or human culture at which scientists and their bioethical helpers will balk. There is no recognition that nature has its own integrity which we disregard at our peril.

Likewise, its discussion of the issues raised by changing the human germ line completely fails to do justice to the arguments that have convinced the large majority of ethicists and have resulted in international bans on the use of such techniques.

For more information, contact Dr David King on 020 7502 7516/07854 256040.

Notes for Editors

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

2. Potential risks to the child and flaws in the HFEA's report

Since there is not nearly enough research evidence it is hard to reach a firm conclusion on whether these techniques are safe or not. However, there is plenty of background evidence from experience with other reproductive technologies to suggest that there may well be a problem. Even basic IVF is now known to increase the incidence of certain disorders, and there is a general correlation between the degree of manipulation and the severity of the side-effects. Thus with nuclear transfer techniques used in animal cloning, the effects are very obvious and severe. Although this is probably largely due to errors in reprogramming, it is also likely, in part, to be due to embryo manipulation. The Newcastle techniques involve nuclear transfer as well as enucleation (or removal off the spindle) of the donor egg.

A further reason for concern is the problems observed using a much less invasive technique, ooplasm transfer, in which mitochondria are transferred between eggs. This was observed to result in chromosomal abnormalities and developmental disorder in a child born through the use of the technique ( ). The HFEA report tries to minimise concerns about this technique, by suggesting alternative explanations of the problem, and fails to mention the case of developmental disorder. This technique has now been discontinued because of these safety concerns, yet the proposed Newcastle techniques are considerably more invasive.

Further evidence of likely safety problems is the fact that in the Newcastle team's published paper the rate of production of blastocysts from embryos created using the techniques was half that of the control embryos. It seems reasonable to assume that if the manipulations make half the embryos non-viable at such early stages there will be more subtle effects on the remaining embryos. The opposite assumption, that the remaining embryos are healthy seems extremely risky.

The only significant evidence of safety of these techniques is a study involving the creation of only four monkeys, which were followed up for only two years.

Flaws in the HFEA scientific report ( )

The HFEA panel barely considers the likely damage to embryos from these manipulations, yet in paragraph 5.5 it suggests experiments designed to test that issue, which shows that this is a significant concern. However it provides no justification for saying that these experiments are not essential before committing clinical trials. In fact, most of the experiments that it regards as optional would normally be part of the basic safety research needed before clinical trials could begin.

The HFEA report also fails to deal with evidence submitted by Dr M Chiaratti, indicating that mixing of mitochondria can lead to epigenetic problems in embryos and foetuses (Hawes SM, Sapienza C, Latham KE. Ooplasmic donation in humans: the potential for epigenic modifications. Hum Reprod 2002; 17:850-852.)

Overall, it seems that there is not nearly enough evidence to justify beginning clinical trials and the HFEA panel was right to insist upon further safety research. Until the results of this research are available, and conclusions can be drawn about the likely risks to the child, launching a public consultation on the techniques' acceptability is highly premature.

3. The Council of Europe Convention on Biomedicine and Human Rights (1997) states that:

Article 13 - Interventions on the human genome

An intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants .

4. Before its consultation on financial compensation for egg donors in 2009, HFEA chair, Lisa Jardine, gave an interview to The Times, in which she stated her support for outright payments to egg donors, which would in fact be illegal.

5. In 2007, in the run-up to its consultation on creation of human-animal hybrid embryos, the HFEA granted provisional licenses to researchers seeking to use this technique.

6. Patrick F. Chinnery and Douglass M. Turnbull, American Journal of Medical Genetics (Semin. Med. Genet.) 106:94-101 (2001).