Oral Answers to Questions

Debate between Mark Pritchard and Jane Ellison

Tuesday 5th January 2016 Commons Chamber

[Jane Ellison]

I certainly do not recognise the shadow Minister’s characterisation of the cancer drugs fund. Some £1 billion has been committed to it and it is being reviewed. The fund was introduced by the previous Government, and we are very proud of it. It has made a big difference to the lives of more than 80,000 patients. More widely, the recent cancer taskforce published its report, “Achieving world-class cancer outcomes”, and it made many recommendations, which are particularly relevant to rarer cancers and blood cancers, many of which focus on improving access to diagnostic testing.

[Mark Pritchard (The Wrekin) (Con)]

Of the 7% of the population that will suffer at some point in their life from a rare disease, 75% are children. Unfortunately, 30% of those will not reach their fifth birthday. What more can be done for Great Ormond Street hospital and for Birmingham children’s hospital, which do such excellent work?

[Jane Ellison]

My hon. Friend is quite right to highlight the number of people who will be affected by such diseases. There are between 6,000 and 8,000 rare diseases. Among the things that the Government are doing that will make a really big difference to some of the institutions that he mentioned and others, and particularly to sufferers, is the 100,000 genomes project, in which the Government have invested. The creation of a network of genetic medicine centres will underpin that further development of genetic testing services. As a very large proportion of rare diseases are genetically based, we want to make significant progress with that genomic work.

Mitochondrial Transfer (Three-Parent Children)

Debate between Mark Pritchard and Jane Ellison

Wednesday 12th March 2014 Westminster Hall

[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.