Mitochondrial Transfer (Three-Parent Children)

Jane Ellison Excerpts

Wednesday 12th March 2014 Westminster Hall

[The Parliamentary Under-Secretary of State for Health (Jane Ellison)]

It is a pleasure to serve under your chairmanship, Mr Pritchard. With the limited time available to me, I will set out some of the process by which we got to this point, but it goes without saying that these are extremely serious issues. I listened respectfully to colleagues’ concerns. There were some technical interventions and I will get back to colleagues about any concerns that I cannot answer now.

This is exactly why we are having consultation, and why I can confirm that the matter will be debated on the Floor of the House. The regulations will be subject to the affirmative procedure and there will be every chance to return to the issue and to debate it in full. I give that assurance. I know that I will not have time to respond to some points that are technical and scientific and I do not want to get them wrong, so I will write to hon. Members after the debate.

[Robert Flello]

On that point, will the Minister allow me to intervene?

[Jane Ellison]

I have not said anything yet, but go on.

[Robert Flello]

When the debate does come before the House, right hon. and hon. Members will look at things such as Library briefing notes and Parliamentary Office of Science and Technology notes, which normally I commend in the highest terms. My concern about the POSTnote entitled “Preventing Mitochondrial Disease”, which is Number 431 from March 2013, is that it talks about people who oppose this as simply being in a pro-life camp. That sort of language is very unhelpful, because the opposition is far wider than that.

[Jane Ellison]

I did not write that brief. I have never used that language and I would not. I accept—indeed, it is right—that this will be a subject of parliamentary debate, because it involves important issues. Just as Parliament has previously debated advances in science, such as IVF, and considered and weighed in the balance the concerns and the potential benefits, so that will happen again. I am certain that people will come to their own conclusion. These matters are normally decided by votes of conscience. I would be very surprised if this matter was not decided in the same way; in fact, I am sure that it will be.

Let me try to respond to some of the points and at least go through the process by which we have got to this point. I should say, though, in response to the intervention that was picked up by colleagues that we will arrange parliamentary briefings with, for example, some of the scientists involved and with the chief medical officer. I hope to be able to give hon. Members the opportunity to put questions directly to some of the people involved. There will be opportunities at all stages along the way, I hope, for colleagues to ask questions and get answers. What they think of the answers will obviously be down to them, but we will try to make it possible for people to come to a very informed view.

I am grateful for this opportunity. I am grateful that hon. Members have had a chance to put some of their concerns on the record, because that helps us in preparing for debates ahead. It gives us a heads-up on some of the areas of particular concern. Obviously, I have also been receiving correspondence about the matter.

The chief medical officer for England announced last year that the Government would go ahead with the development of draft regulations to allow mitochondrial donation in treatment. The consultation began on 27 February and will run until 21 May. I have already recognised the deep sensitivity of these issues. Since we were first approached in 2010 to make the regulations, we have been comprehensively collecting expert opinion and public views, and I will explain how that has been done. However, I understand that for many hon. Members and for many members of the public, this will ultimately be an ethical question. There will be strong views on both sides of the House, as we have seen today.

My hon. Friend the Member for North East Somerset (Jacob Rees-Mogg) touched on what mitochondrial disease is. It is a genetic condition of mitochondria—the part of the body’s cells that produces the energy that they need to function. It tends to be described, for the benefit of the general public, as the “battery pack” that powers a cell.

A person’s mitochondria come from their mother’s egg. Therefore, if a woman has mitochondrial disease, it is likely that she will pass it on to any children she may have. Mitochondrial DNA is separate from an individual’s genomic DNA, which is in the nucleus of the body’s cells. Mitochondrial DNA disease can be devastating, but the disease affects everyone differently. The range of different effects can include heart disease, liver disease, poor growth, loss of muscle co-ordination, visual and hearing problems and mental disorders. Rare conditions caused by faulty mitochondria include forms of Leigh’s syndrome, which can cause multiple symptoms in infancy, such as muscle weakness, heart and kidney failure and nervous system dysfunctions.

Some affected children live short and painful lives. They are constantly in and out of hospital. The quality of life for them and their families is seriously diminished. I have been contacted by a family in that position in my constituency and I suspect that other hon. Members will be as we continue to engage in this debate in the coming weeks and months.

The condition affects approximately one in 5,000 adults, although one in 6,500 babies are born with a severe form of the disease that can lead to death in early infancy. It is estimated that about 12,000 people live with a mitochondrial disease in the UK, and there is no cure. However, research has been ongoing at the Newcastle centre for life, among other places, for many years. In anticipation of significant advances in this field, the Human Fertilisation and Embryology Act was amended in 2008 to introduce a regulation-making power to allow mitochondrial donation to treat serious mitochondrial DNA disease. At the time that amendment was made, Parliament was made aware that there was the potential for these techniques to be developed. The Act was thus amended and that was included.

The mitochondrial donation techniques involve removing the nuclear genetic material from an egg or embryo with unhealthy mitochondria and transferring it to a donor egg or embryo with healthy mitochondria, as my hon. Friend the Member for North East Somerset said.

[Sir Edward Leigh]

Will the Minister give way?

--- Later in debate ---

[Jane Ellison]

If my hon. Friend will forgive me, I will not. I have been left with very little time to respond. I doubt that I will even get through the remarks that I have prepared. However, I would be very happy to talk to him after the debate, and of course we will have much lengthier opportunities to debate the issue, so I do not think that I am cutting off debate.

Allowing the new treatments would give women who carry mitochondrial DNA mutations the choice to have genetically related children without the risk of serious disease. Recent estimates from the scientists leading the UK research in this area are that about 10 to 20 families a year could be helped initially. The scientists and clinicians at Newcastle university believe that allowing these techniques will also advance their understanding of mitochondrial function and mitochondrial diseases. It will enable them to gain a greater understanding of the way in which mitochondrial DNA mutations are passed from mother to child. It could also provide them with a better understanding of how mutations vary in different cells, which may lead to the development of new treatments for those currently suffering from mitochondrial conditions.

The use of the techniques would also keep the UK at the forefront of scientific development in this area and demonstrate that the UK remains a world leader in facilitating cutting-edge scientific breakthroughs. I know that that might be an uncomfortable point for some hon. Members, but other hon. Members have expressed great support for that. There are different sides to the argument. I completely accept that.

I understand that some hon. Members—this has been touched on today—are concerned about a slippery slope. Let me be very clear. Parliament has only provided a power to allow

“a prescribed process designed to prevent the transmission of serious mitochondrial disease”.

That is all that is prescribed in relation to the regulation-making power. We are proposing only to allow the donation of mitochondrial DNA, not nuclear DNA, so that is a further strengthening in terms of the regulation-making power. There is no intention or legal mechanism to go any further.

The draft regulations that are now out for consultation set out how the techniques would be allowed in treatment, the regulatory tests that the Human Fertilisation and Embryology Authority would have to use to give approval to a clinic on a case-by-case basis and how the mitochondrial donor would be treated in terms of information available to any children conceived through the new techniques.

In 2010, the Newcastle researchers approached the Department and requested that, in the light of their progress, we give consideration to the introduction of regulations. Recognising the complexity and sensitivity of this subject, we asked the HFEA to arrange public consultations and oversee a number of independent scientific reviews. An expert advisory group was established and a report passed to the Department in spring 2011. It found that the techniques were not unsafe, but recommended that some further research be undertaken.

After careful consideration of the report, the Department of Health and the Department for Business, Innovation and Skills commissioned the HFEA in autumn 2011 to undertake a comprehensive public dialogue and set of consultations in order to understand the public’s views on and understanding of this issue. The HFEA consultation was held between July and December 2012. It looked at the social and ethical issues raised by mitochondria replacement, as well as addressing a range of practical regulatory issues. Sciencewise, which plays a key role in helping the public to understand complex scientific issues, commended that public dialogue and the HFEA as an exemplar in its approach to gathering public views on a complex issue. As I am sure colleagues can understand, it is never enough, on an issue as complicated as this, to do a press release-style consultation. A simple “for and against” does not suffice to explore the complexity of the issue and ensure that when people express an opinion, they are doing so with a slightly wider understanding of it.

The HFEA gave a full set of advice to the Government in March 2013 based on the findings of the public dialogue and including further advice from the expert panel that it had reconvened. That concluded that although there continues to be nothing to indicate that the techniques are unsafe, further research on some specific aspects should be undertaken. Overall, the advice from the HFEA, informed by the balance of views from the public and stakeholders, was that the new treatment techniques should be allowed so long as they are safe and carefully regulated.

We have also taken account of other published reviews—for example, the 2012 report by the Nuffield Council on Bioethics entitled “Novel techniques for the prevention of mitochondrial DNA disorders: an ethical review”.

Some press headlines have suggested that a child born as a result of the new techniques would have three parents. My hon. Friend the Member for North East Somerset also alluded to that. I do not have time now to go into the detail of why we do not believe that that is the right characterisation. It is important to understand that mitochondrial DNA comprises a very small proportion—0.1%—of total DNA. However, these are issues that we can explore further. I have heard the concerns that have been put on the record today. It is also the Department’s view that this process does not constitute a form of human cloning. The techniques are not equivalent to reproductive cloning, because any children resulting from the use of the techniques would have arisen from fertilisation and be genetically unique.

However, there is clearly a great deal more for us to explore. Today’s debate has been a very helpful chance to hear the concerns of hon. Members expressed on the record. It gives me time to go away, look at the issue with officials and with the experts and ensure that we put in place the right advice and the right level of consultation as we go through the parliamentary process, in terms of—

[Mark Pritchard (in the Chair)]

Order. We now come to the final debate of the day.