Mitochondrial Disease

Anna Soubry Excerpts

Tuesday 25th June 2013 Westminster Hall

[The Parliamentary Under-Secretary of State for Health (Anna Soubry)]

It is a pleasure to serve under your chairmanship, Mr Davies. I congratulate the hon. Member for Newcastle upon Tyne Central (Chi Onwurah) not only on securing the debate but on highlighting the impact of mitochondrial disease on families, and the potential of the new techniques to prevent suffering and premature death and bring hope to the many families who seek to prevent their children from inheriting these sorts of diseases in the future. The hon. Lady does everyone a service in raising the issue. It is a controversial issue, and she has asked me some direct questions.

The Government fully recognise the sensitivity of the issues, and since researchers first approached my Department in 2010 requesting that we make regulations, we have been collecting expert opinion and public views. I will be up front, and say straight away that the chief medical officer has given the issue her careful consideration in the light of the advice and the findings of the Human Fertilisation and Embryology Authority, following the consultation period. I anticipate that she will set out the Government response before the summer recess and, even with my poor mathematics, I can work out that that should certainly be within the next few weeks.

I emphasise that the Department of Health has given careful consideration to the advice and information passed to us by the Human Fertilisation and Embryology Authority on 28 March. We have also taken account of other published reviews, such as the one in 2012 by the Nuffield Council on Bioethics in its report on “Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review”.

Our considerations are being led by the chief medical officer. It is right, if we are to move forward, that she should be the person to lead on the proposals—she may reject them—and, as the CMO, to make any announcement and to be at the forefront of any decision. I am told that her considerations are almost complete.

We recognise that allowing the treatment would give an opportunity for women who carry mitochondrial disease the choice—it is important to state that if regulations are introduced, they would have a choice—to have genetically related children without the risk of serious diseases; I am grateful to the hon. Lady for giving examples of those diseases, and it is the understandable desire of many parents, especially women, not to allow them to be inherited by a child.

This issue is about giving women a choice on whether or not their DNA is put into another woman’s egg. In effect, a woman would be hijacking the batteries, because mitochondria are the batteries that provide the energy, and when they do not work, they cause these diseases. This is not about any kind of genetic engineering, about which people would rightly be concerned.

When the science and the real benefits are explained to people, and the fact that the child who is born has the same genetic background as their mother, they will see that the press have perhaps been a bit misleading in saying that, if it all goes ahead, some children will have three parents. They really will not: they will have their biological mother and father. It is simply that the batteries have been taken from another woman’s egg so that they are sure that any child does not bear some of the very serious diseases that often lead to premature death.

We recognise the concerns that have been raised about whether such techniques are a form of germline or genetic modification in human beings and about whether it would be ethical to allow them in treatment, and those considerations are important. Technically, the resultant embryo would be formed from the eggs of two women, but the genetic material that relates to the child’s characteristics would have been removed from the donor egg, so the child will have genes from the patient and her partner—in other words, from the child’s mother and father—but they will also have healthy mitochondria.

[Chi Onwurah]

I thank the Minister very much for the constructive form of her response and for the new information. Her point about the child not having the genetic material is very important. Will she emphasise that the process is nothing like changing the eye colour or height of the unborn child? An important point to get across is that there is no genetic modification in that sense.

[Anna Soubry]

I absolutely agree. I am perhaps putting the subject in simple terms, but that is how it is. This is actually about the fact that if someone is effectively carrying this particular disease, the mitochondria—the batteries that charge things—are replaced to make sure that they do not have these diseases. Because the mitochondria cannot be taken out of the mother’s egg, a donor egg has to be found. The DNA is removed from that egg and the mother’s DNA is put in—taking those good healthy mitochondria or the batteries—so that she has a healthy egg that, in due course, can be fertilised by the father in the normal way. It is absolutely right that the genetic make-up of a resultant child will be the mother’s and father’s. That does not of course guarantee that the child will have the same colour eyes as their mother, as we all know, especially me as a blue-eyed mother with two brown-eyed daughters. As ever, Mr Davies, I digress, but this is a serious matter.

I pay great tribute to researchers at the International Centre for Life in Newcastle. The hon. Lady should not hesitate to do so, whether her father was there or not, because it is a fine institution. They have been developing their groundbreaking expertise for many years. In anticipation of significant advances in this field, the Human Fertilisation and Embryology Act 1990 was amended in 2008 to introduce a regulation-making power that, if implemented, would enable mitochondria replacement to take place in treatment.

The powers are therefore there, but it is important to say that they would not be implemented in some secondary way. I understand that the matter would have to come to this place and that, in any event, there would be a debate. That is my understanding, but if I am wrong I will correct that, as you would expect, Mr Davies.

In 2010, Newcastle researchers approached the Department of Health and, in the light of their progress, requested that we consider introducing regulations to allow mitochondria replacement in treatment. In response, the Department asked the Human Fertilisation and Embryology Authority to get independent advice about the safety and efficacy of the techniques.

An expert advisory group was established, and a report was passed to the Department in spring 2011. It found that the techniques were not unsafe, but it recommended that further research be undertaken. After careful consideration of that report, the Department of Health and the Department for Business, Innovation and Skills commissioned the HFEA in autumn 2011 to undertake a comprehensive set of public consultations to identify the public’s views about and understanding of this complex and sensitive issue. That consultation was held between July and December last year. It looked at the social and ethical issues raised by mitochondria replacement, as well as addressing a range of practical regulatory issues.

In collaboration with Sciencewise, which has a key role in helping the public to understand complex scientific issues, the HFEA took many different approaches to ensure that it gathered public views on the issue. It held workshops with members of the public, tracking their views over time and in response to new information. It ran what is called a representative survey, an online public consultation, two public meetings through which interested groups and individuals could express their views, and a focus group with families who are personally affected by mitochondrial disease, because their views are extremely important.

The HFEA report was published on 28 March and was passed to the Department. It provided us with three separate strands of advice: the outcome of its public dialogue and consultation; a scientific update on the safety and efficacy of the new techniques; and the issues to consider in introducing an appropriate regulatory framework. The public consultation indicated, overall, that there is general support for allowing the treatment techniques to be used, as long as they are safe and carefully regulated.

We appreciate and recognise, however, that a range of views, not all of which were in favour of a change in regulation, was strongly expressed through the consultation. A significant response came from the religious community, which was not in favour of allowing the techniques, whereas the scientific community, bioethics groups and patient and family groups were in favour.

The expert panel, which was reconvened by the HFEA, concluded that although there continues to be nothing to indicate that the techniques are unsafe, further research on some specific aspects should be undertaken. All the recommended research is currently being undertaken either in Newcastle or Oregon in the United States. The expert panel expressed the view that insufficient research is currently available to recommend one particular technique above another. It also recommended long-term follow-up monitoring of any children born as a result of the techniques.

I conclude where I began by saying that we anticipate that the CMO will announce the Government’s response very soon—before we break for the recess—which is at least some good news. As the hon. Lady said, the issue has been ongoing for several years, so it is important to find out whether it will reach the sort of conclusion that she wants, and we anticipate that that will be very soon.