Human Fertilisation and Embryology

Luciana Berger Excerpts

Tuesday 3rd February 2015 Commons Chamber

[Luciana Berger (Liverpool, Wavertree) (Lab/Co-op)]

The impassioned and thoughtful contributions to the public debate that we have heard in recent weeks and months are testimony to what a sensitive and complex matter this is. Only last night, an event held in Committee Room 10 was attended by hundreds of people who are interested in the debate, and we heard representations from both sides.

On the one hand, we have celebrated the triumph of science that these new techniques represent. It is thanks to years of pioneering research by the university of Newcastle on how we can prevent the transmission of genetic mutations that we are finally reaching the point at which we can consider using these transformative techniques in humans. We have within our reach the possibility of eradicating mitochondrial disease from families who have been blighted by it for generations: families who have endured a disease for which there is no cure, who have suffered daily battles with painfully debilitating symptoms, and who have sadly lost their children prematurely. Those families have had to face up to the risk, and perhaps the certainty, that to be a parent must come at the expense of a difficult and, in too many cases, painful life for their children. Not only would children born through such techniques be free of such conditions, but so would their children and grandchildren. This treatment would break a chain of misery that would otherwise have ruined generations of lives.

On the other hand, we are grappling with the serious ethical and moral questions that are raised by the proposed introduction of such techniques. Members have previously shared their anxiety about the uncharted territory in which we now find ourselves. The proposed regulations would make Britain the first country to legalise mitochondrial transfer, and scientists have acknowledged that there would always be a “leap of faith” the first time the technique was used.

[Robert Flello]

I think we need to dispel the myth that there will be a “first time”. This was done more than a decade ago. In its recent analysis, the HFEA ignored the Zhang study. The Minister is shaking her head. She has clearly not read the study, which showed that when the technique was first tried, triplets were conceived. One was terminated almost immediately—within 30 days—and, of the other two, one was stillborn and the other died as a result of miscarriage. That is the reality. This is not groundbreaking; it has been done before.

[Luciana Berger]

I shall be dealing with the expert panel reviews that have been conducted since the date to which my hon. Friend has referred.

It is right that we have had a chance to hear all the arguments and to give them full and proper consideration, but it is critical to the integrity of the decision that is eventually reached for the debate to be based on the facts. When debating matters such as this, we will naturally hear a number of contradictory assertions. I am sure that the Minister will reassure the House about any further issues that are raised during the debate.

[Mr Donohoe]

May I ask the shadow Minister a simple question? Is this a case of DNA being genetically modified?

[Luciana Berger]

I do not believe that that is what is being proposed, but I shall deal with my hon. Friend’s very specific point later in my speech.

[Richard Drax (South Dorset) (Con)]

I know from a meeting that I attended before the debate that the HFEA has said, “PNT involves genetically modifying a human embryo”.

[Luciana Berger]

That point was raised in an earlier intervention. I think it is clear from reports following reviews by the expert panel that it has already been specifically addressed, but I shall deal with it in more detail later.

[Dr Julian Huppert (Cambridge) (LD)]

There seems to be a lot of confusion between nuclear DNA and mitochondrial DNA. It might help the hon. Lady and the House if I point out that they have completely different origins. They have a different genetic code; they are not related. The origin of mitochondria is bacteria that were engulfed by cells. They are very different. The House should be aware of that.

[Luciana Berger]

I thank the hon. Gentleman for that clarification.

Many concerns have been raised, the first of which is that this process is being rushed through. Anyone who has been involved in the development of these techniques would disagree that this has moved quickly. Professor Doug Turnbull and his team at the university of Newcastle have been researching this for 15 years. It was over six years ago, back in 2008, that the Human Fertilisation and Embryology Act 1990 was amended to introduce the powers to allow regulations that would enable mitochondria replacement to take place to be brought forward. It was back in 2010 that researchers at the university of Newcastle developed the techniques to avoid diseased mitochondria being passed from a mother to her children. After another three years of consultation and review processes, the Government announced in July this year that they would be bringing forward the regulations to enable mitochondrial donation techniques to be used, and that is what we are voting on today.

[Guy Opperman (Hexham) (Con)]

The hon. Lady and I both attended the meeting last night, which was very productive and helpful. Does she agree that this is about choice for the families? I have constituents who have this particular disease and constituents who work at Newcastle university, and what we are trying to do is provide a scientific way forward, under a highly structured and licensed regime, to alleviate these particular families’ suffering.

--- Later in debate ---

[Luciana Berger]

I thank the hon. Gentleman for that intervention. It was clear last night when we heard from the affected families that they wanted that choice, and these regulations very specifically only apply to those families that are affected by mitochondrial disease.

[Mr Peter Bone (Wellingborough) (Con)]

Will the hon. Lady give way?

[Luciana Berger]

I am going to finish my point, if I may.

In the intervening years the science and ethics of these techniques have been extensively debated. The Nuffield Council on Bioethics and the HFEA held extensive public consultations in 2012 and identified broad public support for the use of these techniques. There have been three expert scientific review panels—in April 2011, March 2013 and June 2014—all of which found no evidence to suggest that the techniques are unsafe for clinical use, and only last week a group of eminent scientists and experts in medical ethics, including Professor Sir John Sulston, Baroness Warnock and Sir Paul Nurse, wrote to The Times urging Parliament to approve the new regulations. They argued that the question parliamentarians must consider is not whether we would want to use this technique ourselves, but whether there are grounds to prevent affected families from doing so. I again reiterate what we have heard in the representations from families, and particularly women of child-bearing age: they want the opportunity to use these techniques.

[Mr Bone]

The hon. Lady is making a very good speech and is trying to make it balanced. She talked about last night’s meeting, which I understand went on for quite some time, and there has been a lot of debate outside this Chamber, but is she satisfied that we come here to the Chamber this afternoon with only 90 minutes to discuss this? Would it not be better if we were to withdraw this motion today and come back with more time to debate it next week?

[Luciana Berger]

Unfortunately, it is not in the Opposition’s gift to determine the time allocated for these debates. I would have welcomed further debate, and we had an opportunity in a previous Backbench Business Committee-initiated debate to discuss these matters.

[Dr William McCrea]

Will the hon. Lady give way?

[Luciana Berger]

I am going to make some progress, because I am conscious—referring back to the intervention of the hon. Member for Wellingborough (Mr Bone)—that we have limited time and many Back Benchers wish to contribute.

It is important to note that the use of these techniques will not be rushed into lightly if Parliament does pass them today, and specialist clinicians will then have to obtain a licence from the HFEA to use the techniques. We heard last night that this will only be in centres of excellence, and the HFEA will consider applications on a case-by-case basis.

We have heard concerns in previous debates that allowing mitochondrial donation is a dangerous road to start down, and that it could potentially lead to designer babies and parents being able to select the physical characteristics of their children. But we have also heard in the public debate that these fears do not take into account the fact that these regulations are very specific and cover only mitochondrial DNA, not the nuclear DNA that determine our physical characteristics. The legislation only permits the use of these techniques in the clearly defined situation of incurable mitochondrial disorders.

The fact that these techniques apply only to the mitochondrial DNA and not to nuclear DNA should provide further reassurance to those Members concerned that this process would result in “three-parent babies.” As we have heard, mitochondrial DNA only controls mitochondrial function and energy production. Importantly, nuclear DNA, which makes us who we are and determines appearance and personality, will not be altered by the techniques that we are discussing today.

The regulations clarify that a mitochondrial donor is not to be treated as a parent, by contrast with the legal position for sperm and egg donors, who are treated as people who would, or might, be the legal parent of a child born from their donation.

There are questions around the safety of these techniques. As we have heard, this technique has received unprecedented scrutiny by the HFEA’s specially convened expert scientific review panel. However, it is possible that side effects could emerge over time and scientists have acknowledged that there would always have to be a “leap of faith” the first time the technique is used in humans.

[Sir Edward Leigh (Gainsborough) (Con)]

On the question of safety, does the hon. Lady not consider it significant that the Food and Drug Administration in the United States said that it was not clear that the scientific procedures were effective and safe? The FDA, of course, refused to allow the use of Thalidomide while we did, and the rest, as they say, is history.

[Luciana Berger]

I understand that the FDA has written to the British press in the course of the last week to contradict that position. There is a very different political situation in the US, and there is a very different set-up there in terms of the FDA compared with here and what we are discussing today.

[Angela Smith (Penistone and Stocksbridge) (Lab)]

Does my hon. Friend agree that the fact is that any scientist would say that no technique is entirely safe but the risk in this case is very low indeed, and completely justifies the leap of faith she describes, which is in effect a further advance in the use of IVF technology—which itself was pioneered as a leap of faith in 1978?

[Luciana Berger]

My hon. Friend makes some very important points, particularly about the assessment of risk, which has been done extensively throughout this process.

The question is whether the benefits of preventing the transmission of mitochondrial disease, and the likelihood that children will continue to be born who will die in infancy, outweighs the risks of the techniques. The scientific community and the families experiencing mitochondrial disease say that they do; and according to research, almost 2,500 women in Britain of child-bearing age are at risk of passing the condition on to their children. It is now up to Members to decide whether they agree.

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

I am most grateful to the hon. Lady for setting out a balanced case. Can she clear something up for me? I understand that there are two sources of mitochondrial disease: the DNA in the nucleus as well as the mitochondrial DNA. Can she confirm that mitochondrial disease from the nuclear DNA will remain in our population even after this treatment is licensed?

[Luciana Berger]

I hope the Minister might be able to address that in her response to the debate, with the support of her officials. It is not something I have been made aware of, and it certainly has not come up in any of the discussions or debates that I have attended.

I will now conclude, as I know that many Members wish to contribute. The research has been done, the reviews carried out and the experts and the public have been consulted. Time is precious for those parents at risk of passing on mitochondrial inherited disease to their children, and I believe that we must not delay any further.

[Several hon. Members]

rose—