Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015
Lord Alton of Liverpool Excerpts(10 years, 11 months ago)
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Baroness O'Loan
I thank the noble Lord for his intervention. It remains the case that there is a shortage of donated eggs. My concern is for the women who are asked to donate eggs.
Lord Alton of Liverpool (CB)
I am sorry to interrupt my noble friend, but, given that my noble friend Lord Patel mentioned this case, perhaps I might reinforce what she is saying, because Newcastle is not offering to provide donation opportunities for women but is asking them whether they will sell their eggs, at £500 per cycle. We all know that that can lead to hyperovulation syndrome, an issue which I raised in your Lordships’ House last week and which I know concerns many of us from all sides of this argument. So there is another dimension involved in this. My noble friend Lord Patel was also right to say to my noble friend Lady O’Loan that when we debated these issues in 2009 many of us pointed to things like adult stem cells and the work being done by Professor Shinya Yamanaka. We said then that arguing for animal/human hybrids was a diversion when much more important work, like that which the noble Lord, Lord Patel, has just mentioned, could have been undertaken.
Baroness O'Loan
I thank the noble Lord for that intervention. I am not arguing against this process; I am arguing against the introduction of these regulations at this time in the absence of sufficient knowledge and protection. We have to look at the factors, as the noble Lord, Lord Alton, said. Being paid to donate one’s eggs constitutes a very serious issue for women who are in poverty and who will do it as a way of raising money, possibly even to look after their own children. We need to provide protection for such women.
In conclusion, we should not hasten ahead without putting in place clear and comprehensive systems for monitoring the outcomes of all controlled ovarian hyperstimulation treatments, including those treatments that would result in the generation of eggs to facilitate PNT and MST. In this context, I simply ask that we proceed more carefully and that we back the Motion moved today by the noble Lord, Lord Deben.
Lord Alton of Liverpool (CB)
My Lords, the noble Lord and I agree on much of what he has been saying today. However, in 2013—just two years ago—when he spoke at the Intelligence Squared debate, he said:
“And it’s worth bearing in mind that abnormal children have been born as a result of mitochondrial transfer. This has been completely unpredictable”.
I wonder what, if anything, has happened to change his mind about that. I suspect that he and I are agreed that there obviously are dangers involved in this and safety questions that he will want to address. May I also ask him—and I will not intervene again—whether he agrees with what my noble friend Lord Patel said earlier about the situation in China? I have with me the document Fertility and Sterility 2003, vol. 80, published on 3 September 2003, which was written by Zhang and others, who looked at the procedure that was used in China. Although we were told that this was not cytoplasmic transfer, does he agree with my noble friend Lord Patel, or does he agree with what is here in the statement that this was a pregnancy derived from human nuclear transfer?
Lord Patel
I think that the noble Lord was asking him to reply to my comment. He is quite right that China has used pronuclear transfer techniques, but the disaster was upsetting to me.
Lord Ribeiro
I take the noble Lord’s point. If I wanted to, I could explain why this is not an issue. One point that arises is that it is illegal to tamper with the nucleus. The technique that we are discussing relates specifically to mitochondria.
I will move on. Having seen this technique at work in the clinic, I am absolutely reassured that the expertise is there and, therefore, that the technique of mitochondrial donation, if allowed, could be carried out successfully.
I will speak briefly about the families who are currently facing the prospect of having children with severe mitochondrial disease. We are told that the numbers of those who will have severe disease is in the order of 10 or 20 per year. This technique can be fully utilised only after the regulations have passed, the HFEA has ensured that it is safe and each unit has demonstrated that it can do it safely. Only then will these families be able to have this done.
Informed consent is a prerequisite in any medical procedure. Informed consent is important because patients have to be sure that what they are having done is in their best interest. They have a choice of whether to accept what the doctor is offering or to reject it. My noble friend Lord Ridley referred to Claire Wright, a mother who lost a baby at 18 months. I was fortunate to meet her yesterday and to hear her story. What she said to me was very moving and touching. If she had the opportunity to have mitochondrial donation done, her concern was that the clock was ticking and that she may have reached the point where she would no longer be able to undergo the procedure. Yes, she could remain childless. Yes, she could adopt. But she would like to have a child that bears some of her genetic characteristics. I think that this technology will allow that to happen.
Nothing that we have in medicine at the moment can provide 100% safety—
Lord Alton of Liverpool
I am grateful to the noble Lord. Before he moves on, I want to speak to his point about adoption. Your Lordships will have seen the recent parliamentary reply on this. In the past five years, around 5,000 newborn babies have been available for adoption. That is all, compared with more than 1 million babies that have been aborted during that period. Does he not think that we should be much more interested in seeing if we can put right that imbalance?
Does he also recognise that there is a difference between the two techniques that are being offered to the House today, maternal spindle transfer and pronuclear transfer, in that one requires the destruction of human embryos, 2 million of which have been destroyed since the original legislation was enacted in 1990, and the other does not? On the basis of what I think he believes and says, is it therefore not only more prudent but more ethical to use the technique that does not result in the destruction of human embryos?
Lord Ribeiro
It was made very clear by the noble Lord, Lord Patel, and others that the need for the two techniques is to allow the HFEA to make a decision on which is the preferable technique. We have a situation at the moment where many of the embryos that are produced are discarded after the 14 days or so that are allowed. I will not go into the question of adoption. It is a matter of choice. If the family would prefer to have a child without this affliction, that is their choice, and they may not choose to go down the adoption route.
Returning to the subject of safety, as has been stated, no procedure can guarantee 100% safety. Even the natural birth that we all go through will produce children with defective genes and abnormalities; even nature cannot get it 100% right. To expect a situation where we have to demonstrate to all and sundry that this procedure is 100% safe is impossible.
Finally, it is important to recognise that passing this regulation is not opening Pandora’s box. We are not going down the route of eugenics and we will not create monsters. We must trust the scientists. We must recognise that we have regulation in this country—one of the most regulated countries in the world in the health field—and I believe that we must leave it to them to make the case. As was said by my noble and learned friend Lord Mackay of Clashfern, the decision was already made in 1990, when he was responsible for taking the Bill through Parliament. In 2008, it was modified with the full understanding that this type of technique might well be brought into use.
The day has come, the time has come and, frankly, we must just get on with it.
Baroness Warwick of Undercliffe (Lab)
My Lords, I come to this debate without any expert legal or medical experience or perspective. As a former chair of the Human Tissue Authority, I worked closely with the Human Fertilisation and Embryology Authority, the well established regulator in this area. I came to know the way in which it regulated and certainly had confidence in it, as indeed Parliament has. As a former chief executive of Universities UK, I am also familiar with the research trials that are rigorously and vigorously undertaken in health research before any change or new technique is introduced into clinical practice. I have come to know the bodies which speak for science and for medical research, such as the MRC and the Royal Society, and the Association of Medical Research Charities, of which my noble friend Lord Turnberg has been a scientific adviser, as well as the Nuffield Council and the Wellcome Trust. I realise how fortunate we are in this country to have pre-eminent organisations, respected around the world, the main aim of which is to ensure that research is rigorous, honest, thorough and ethical. I say all this because I take great comfort in the fact that, where there are complex areas of science or new techniques, particularly where they might be controversial—as with fertility and genetics—we have the knowledgeable, forensic and wise guidance of these bodies to help us in Parliament to arrive at secure solutions.
Mitochondrial DNA disease is severe. In most cases, we are told, it causes early infant death, and the few children who survive suffer multiple health problems. Mitochondrial donation, a new reproductive technology developed by our world-leading scientists in Newcastle, is important because it enables families affected to have a healthy child. Our decision today will be immensely important to those families.
A key question has been raised about the safety of the procedure. As others have said, while no medical procedure can be guaranteed to be 100% safe, a huge amount of testing has been done to establish the relative safety of this particular procedure.
I have no professional expertise in this or in any other area of disease. So, like most other women and men in the street, I rely on the rigour and competence of our regulators, ethicists and clinical testing systems to provide the best possible guidance on new techniques and procedures, to enable me to make up my mind—even if some of the evidence is contradictory. All the bodies that I referred to earlier, and others which represent the families of those tragically affected by the disease, favour this regulation to permit mitochondrial donation. They have provided excellent briefings, and there was a hugely helpful seminar yesterday where experts on different aspects of this issue addressed a range of concerns. They have pointed to seven years of intensive scrutiny, three separate reviews of the scientific evidence on the technique’s safety, independent ethical reviews and an extensive public consultation. Currently, the law allows for these techniques to be used only in research. It is up to us in Parliament to decide whether these techniques are ethical and whether they may, with safeguards, be used in patients.
The Nuffield Council on Bioethics found that, given the benefits to individuals if shown to be sufficiently safe, the techniques are ethical for families to use. The public, during consultation, concurred. The Wellcome Trust has helpfully set out the scientific evidence and detailed reasons why the procedure cannot be seen as genetic modification. What is very clear is that scientists throughout the lengthy period of research have been open and transparent. Nothing has been hidden, including their disagreements. There has been no conspiracy, as some of the critics seem to have suggested.
I found that I had a lot of sympathy with my noble friend Lord Turnberg and the noble Viscount, Lord Ridley. All the evidence I have seen and the arguments I have heard reassure me that this is not a slippery slope or an open door, or any other cliché. Nuclear DNA is not altered, so donation will not affect the child’s appearance or personality, or its uniqueness. It will simply allow parents to choose to have children who are genetically related to them but who are free from potentially devastating disease. I trust that the House will support these regulations.
Lord Alton of Liverpool
My Lords, I am grateful to the House. Although of course I have ethical objections to the regulations, which are well founded and have been pretty well rehearsed on previous occasions, the Motion in the name of the noble Lord, Lord Deben, does not invite us to vote on the ethics. Therefore, accepting what the noble Lord, Lord Taylor, has just said to the House, I will not explore those ethical issues today but will stick to the points that the noble Lord, Lord Deben, raised earlier on, which concentrate on safety, legality and definitions. In supporting the Motion I want to address three points: procedure, pertinent questions and the specific issues posed by pronuclear transfer—one of the techniques made legal by these inappropriately combined regulations. It is worth saying in parenthesis that there is a third technique, polar body transfer, which was referred to during the discussions that the noble Earl was good enough to arrange for a group of us to have. That is being explored at this time, and will require yet more regulations to come before your Lordships’ House.
Lord Alton of Liverpool
Yes, and so it should, as the noble Baroness says. However, why are they not being taken together, why is there a hurry, and why are we not considering them all at the same time? Some raise particular issues, and others raise different issues, so many of us find that being asked to take it or leave it today is very difficult.
Some 41 Members from all sides of the House of Commons have written to your Lordships asking us to provide the opportunity for further consideration to be given to these regulations. For 18 years I served in another place. I would have been appalled if only 90 minutes had been provided during my time there, when we discussed in 1990 the original legislation or subsequent changes to it—90 minutes on unamendable regulations. Half the House of Commons—300 compared with 350—either voted against or abstained: 128 voted against, 172 abstained, and 300 voted for. As the noble and learned Baroness, Lady Scotland, said to us earlier on, the Lord Chancellor—and we have heard from an eminent and very learned noble Lord today, a former Lord Chancellor—and the Attorney-General both voted against the regulations. Subsequently, we have received representations from 50 Members of the European Parliament—I say to my noble friend Lord Walton that they were not all Roman Catholics—including Socialists, Christian Democrats, Communists, Greens and others, and internationally respected scientists, challenging the safety and the legality of what we are being asked to approve. Last week Professor Christopher Exley, a British scientist, described these procedures as,
“a genetic experiment which could have disastrous consequences for generations”.
That is not a religious view. This requires us to take the moderated view that the right reverend Prelate the Bishop of Carlisle commended to us earlier on. Yet, procedures permitted only a 90-minute debate in the Commons on an unamendable order, and if it were not for the noble Lord, Lord Deben, today, we would not have the opportunity to be discussing these complex questions—
Baroness Farrington of Ribbleton (Lab)
As a point of fact—and I hope that the government Chief Whip will agree with me—we would have debated this order in this Chamber under the normal procedures of this House with or without the amendment that was put down, because that is the practice of this House. I can see the government Chief Whip nodding and the noble Baroness who chairs the Delegated Powers Committee agreeing.
Lord Alton of Liverpool
I am glad to hear what the noble Baroness, Lady Farrington, has said to us today. It is important that it should be on the Floor of this House, therefore we are all agreed. I contrast the 90 minutes given to the House of Commons to discuss this with the 90 hours that Parliament spent discussing fox hunting. I ask noble Lords to contrast those things. We are required to show due diligence and scrutiny, especially over controversial legislation.
It is not just the absence of the preclinical tests recommended by the HFEA that suggests that the cart has been placed before the horse, but the disingenuous decision by the clinic promoting these regulations—even before your Lordships have debated, let alone approved, these regulations—to offer women money, as we heard from my noble friend Lady O’Loan earlier on, to sell their eggs for these procedures, a practice which itself can be injurious to their health, while telling us:
“It was never about politicians voting on whether it was safe or not”.
That seems almost a contempt of Parliament, and is certainly an extraordinary dismissal of health and safety considerations, which everyone has admitted this afternoon are a consequence of what we are being asked to agree. We have a duty to satisfy ourselves about questions of public safety.
I have experienced this afternoon something of a sense of déjà vu on the arguments, which are so reminiscent of those which persuaded your Lordships to vote for animal/human hybrid embryos in 2007. Although my noble friend Lord Patel, who I think is about to intervene on me again, said earlier on that there was a significant breakthrough by Professor Shinya Yamanaka just two weeks after the Bill passed, that is not entirely accurate. The Yamanaka breakthrough came in 2006 in the journal Cell, not after the Bill passed but before it was even published. If you look back at the Hansard, as I hope Members will, I argued repeatedly that the proposal was redundant because of the Yamanaka breakthrough and that we should not have voted for it. However, despite the Yamanaka breakthrough, many argued that animal/human hybrid embryos were necessary.
Before we rush pell-mell into authorising something which the rest of the world—from the federal agency in the United States to the People’s Republic of China—has prohibited, may I ask the Minister to answer some pertinent questions? First, what regard has he had to the increasing demand for women to give up their eggs for these techniques, the failure of the HFEA to monitor the drugs and dosages used for ovarian stimulation, and published data by Newcastle indicating an incidence of hospitalisation due to such stimulation due to the frequent collection of more than 20 eggs per cycle? Does he regard it as ethical to ask women to sell their eggs for £500?
Secondly, what is the cost of these regulations, both human and financial, when pronuclear transfer—the second of the procedures that have been referred to— requires the destruction of at least two and in some cases 10 healthy embryos for every procedure? Contrast the financial cost, too, of an issue I have raised regularly on the Floor of your Lordships’ House; namely, the failure to provide vital and much needed public funding into finding a cure for diseases such as mesothelioma, which will take the lives of 60,000 British people in the next 30 years.
Thirdly, and more specifically, why have the Government not waited for the outcome of the HFEA’s recommended preclinical experiments before proceeding? Fourthly, like noble Lords today, Dame Sally Davies, the Chief Medical Officer, said at a meeting that I attended with the noble Earl:
“No one will guarantee that it is safe”.
That being so, and given the absence of safety trials, how much has the National Health Service set aside for compensation if safety fears are realised? One recent payment to the parents of a baby damaged at a hospital reached a staggering £10 million.
Finally, I turn to the specific issue of pronuclear transfer. These regulations have bundled together two different procedures. As I said, pronuclear transfer—PNT—unlike maternal spindle transfer, requires the destruction of human embryos. It is a technique that has been specifically advocated by researchers at Newcastle. To date, most applications of this technique have been in mice. However, the Weatherall report of 2006, sponsored by the Academy of Medical Sciences, the Royal Society, the Wellcome Trust and the Medical Research Council, on page 85 stated the following:
“Humans and non-human primates share many features of reproductive biology that are not present in other mammals … Hence, rodents and other non-human primates have only limited usefulness as models of human reproductive physiology”.
Consistent with this, the report of the HFEA’s expert panel in April 2011 said that before the technique could be considered safe to use clinically, it was critical to undertake,
“PNT in a non-human primate model, with the demonstration that the offspring derived are normal”.
Has this been done? Nearly four years later, the answer is still no—even though most postgraduate researchers would have already completed a doctorate within this timeframe.
Strikingly, a news article for the journal Nature stated on 19 January 2012:
“The Newcastle researchers do not have plans to determine whether primates conceived through pronuclear transfer come to term and are healthy”.
Remarkably, the HFEA’s expert panel then changed its mind about preclinical experimentation in primates being critical for pronuclear transfer, in its ensuing report in 2013. The only explanation provided was exceptionally brief and far from compelling. It said that:
“Current research using PNT in Macaques has yet to be shown to be successful. From unpublished data it appears that Macaque zygotes do not survive the PNT process well”.
The panel now believes that the macaque may not be a sufficiently good model for the human. If macaque embryos do not have a good record of surviving pronuclear transfer, and human eggs are even more sensitive, are not problems with human embryos more likely? Surely this suggests the need for proceeding even more cautiously, not less.
The Joint Committee proposed by the noble Lord, Lord Deben, should reflect on the HFEA expert panel’s minutes of 12 February 2013, in which Dr Dieter Egli, of the New York Stem Cell Foundation, explains that he was,
“sceptical about the clinical application of PNT”,
because a structure known as the centrosome may be left behind, and that,
“the consequences of this need to be investigated”.
The proposed Joint Committee should also consider the minutes of the HFEA teleconference with Dr Shoukhrat Mitalipov on 30 January 2013, which reported:
“Dr Mitalipov expressed the view that development of MST or PNT embryos to blastocyst was not in itself enough to give confidence that the techniques are safe and effective”,
and the recent remarks of Professor Justin St John, a geneticist at Monash University in Australia with considerable expertise on the behaviour of mitochondria in nuclear transfer, who said:
“As well as analysing foetal development in a non-human primate model, it is essential to analyse offspring to determine that no abnormalities appear at least during early life”.
Not only have the researchers at Newcastle refused to perform such preclinical research in non-human primates, I have been unable to find evidence of their own prior experience in obtaining healthy offspring of any species following pronuclear transfer, or even in taking any such embryos past the blastocyst stage.
Lord Willis of Knaresborough
Clearly, I am not going to get to speak this evening, so I ask the noble Lord a very simple question. Does he have any faith at all in the HFEA to do what it actually says on this tin? If the regulations are passed today it will then have the job of deciding when it will be safe to go ahead and grant a licence. If he does not have that faith in the HFEA, will he please say that? Because I do.
Lord Alton of Liverpool
I serve on my own university’s ethics committee, which looks at the use of animals in experiments. Apparently, one of my roles on that committee is to be, as it were, the animals’ friend and to ask whether the experiment is repetitive, whether it is necessary to do such things and what it is going to lead to. There is no one on the HFEA who is the friend of the human embryo. That is a bizarre situation and one I would like to see rectified. But to take the noble Lord at his word, of course I think the HFEA often does a good job, and I admire many of its members.
I will simply say one other thing to the noble Lord. The HFEA is a regulator, not a legislator. That is our duty here today and that is why we are having this discussion. I am conscious that others wish to intervene and I am grateful for the patience of your Lordships’ House in allowing me to put these points. As we ponder on these serious issues revolving around public safety and questions of definition and legality, they deserve far better consideration and scrutiny than has been provided thus far. Surely we should remember the wise advice that those who legislate in haste repent at leisure. Therefore, the proposal of the noble Lord, Lord Deben, for a Joint Committee of both Houses to examine the safety and legality of these regulations deserves our support.
Baroness Barker (LD)
My Lords, since 1990, this Parliament, and, in particular, this House, has shown the rest of the world how these matters should be dealt with. It is for that reason that I hope that we will pass these regulations today.
In 1990, the noble Baroness, Lady Warnock, set down the ethical framework within which we make decisions and within which scientists must do their work and regulators must regulate. In 2008, as the noble Lord, Lord Walton, the noble and learned Lord, Lord Mackay, and others will remember, we debated these and related issues at considerable length. At that time, the scientists came to us and said, “We believe that very shortly it will be possible for mitochondrial transfer to happen”. At that point, Parliament sat and listened to the scientists and said, “Not yet. Not yet”. That is why we passed the permissive legislation that we did, which has led to these regulations.
The noble Lord, Lord Deben, in putting forward his very cogent and persuasive argument, missed out one crucial fact that undermines his argument: research is not linear. Researchers do research and it takes them to places that they had not imagined or they hit obstacles that they did not anticipate. Things change radically, as they did in the case of animal hybrids. That is why we operate as we do, within a system whereby Parliament sets out the principles and the ethics. We require the scientists to come back to us again and again and we are dependent on the information that they give to us.
I went to the same meeting as the noble Lord, Lord Deben, and I formed a very different impression of the scientists. Our top scientists have been making themselves available to Members of Parliament for all of the past year to explain as clearly as they can this science as it is emerging. I do not think that we should abrogate our responsibility in this House. I think we should continue to listen to the scientists. I like the fact that I live in the United Kingdom where we debate these matters. We have the involvement of people from the church and from different faiths and walks of life. We also listen to contributions from people such as the noble Lord, Lord Alton, who are consistently and wholly opposed to this issue. However, it is important that his voice is heard. I do not want the ethical decisions to be sent off to the courts as they are in the United States.
Noble Lords have talked a lot about the emotional issue of meeting the needs of families but they have also discussed the safety of these issues. However, I simply put before the House the response of parents to the suggestion that they might have a child who proved to be infertile. When they were asked how they would feel about that, they gave the clear response, “We love our children as they are and we would not have not had them. However, if we could have had a child who did not have the illnesses that they have, we would have opted to have such a child, even if that child proved to be infertile”.
The scientists have been absolutely straight with us and have given us the relevant information. They have not said that this process is safe or guaranteed because they cannot do so. The noble Lord, Lord Alton, is right—they will have to come back to us if techniques developed in the future prove to be better and safer than those we are discussing. However, given the information that we have, I for one feel that this Parliament has been fully informed and that we can make a decision—and I hope that we do.
Abortion (Sex-Selection) Bill
Lord Alton of Liverpool Excerpts(11 years, 2 months ago)
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Earl Howe
My Lords, we issued guidance in May of this year. It sets out the expectations around the procedure to be adopted by the two doctors involved: certifying that an abortion meets the criteria set out in the Act by considering the individual circumstances of the woman and how they reached their decision. The guidance also reaffirms our position that abortion on the grounds of gender alone is illegal.
Lord Alton of Liverpool (CB)
My Lords, is the noble Earl aware that in China there have been 34 million abortions on the grounds of the one-child policy and that that has led to a distortion in the population of 34 million more males than females? Similar policies in India using ultrasound scanning tests have also led to the targeting of little girls. Given that some of these policies have been financed directly or indirectly through development funds from our own Department for International Development, will the noble Earl undertake to speak to his colleagues in that department to ensure that no British taxpayers’ money is used for these purposes?
Ebola
Lord Alton of Liverpool Excerpts(11 years, 4 months ago)
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Lord Alton of Liverpool (CB)
My Lords, does not the handful of cases to which the noble Earl has just referred contrast very sharply with the prediction that 1 million people may die in West Africa? Given the fetid conditions and grinding poverty in places such as Monrovia and Freetown, does he not agree that this public health epidemic has been brought about because of the conditions that we have allowed to fester for so long?
Would the noble Earl not agree that the WHO was very slow in responding when this was first identified? Does he not also agree that an immediate problem is the disposal of corpses, which carry the risks of contagion? Furthermore, when will the 700 beds in Sierra Leone to which he alluded actually come on line?
Earl Howe
My Lords, I believe that the WHO itself has acknowledged that its response could have been swifter. It is easy to say this in hindsight, but I am sure that the noble Lord’s view on that is shared by others. Nevertheless, the WHO has not been slow in rallying support for efforts in the three countries affected. It is now working energetically with many developed countries to provide support, and I would not wish to criticise the WHO in those respects.
On the disposal of corpses, the noble Lord makes an important point. We know that many cases of Ebola in the three countries have arisen as a result of people being in contact with the corpses of people who have died from the disease. That has been as a consequence of the cultural traditions in those countries, which are very hard to displace or persuade people not to follow. It is nevertheless part of our effort in Sierra Leone that we should inform people there that their burial customs need to be set to one side for the duration of the epidemic. This is a very difficult thing to do, for understandable reasons, but that is the effort we are making and it is bearing fruit.
As to the programme for building 700 beds, I do not have a precise date to give the noble Lord but if I receive advice before the end of this debate, I shall tell him.
Abortion
Lord Alton of Liverpool Excerpts(11 years, 10 months ago)
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Lord Alton of Liverpool (CB)
My Lords, since the 1967 Abortion Act came into force on 27 April 1968, there have been more than 7 million abortions—around 600 every working day. I have some questions for the noble Earl.
As the law does not permit abortion on demand, and abortion was supposed to be a rarity, how in particular does the Minister explain the 66,000 repeat abortions last year—37% of the total—and the fact that, in some cases, individuals have had as many as nine repeat abortions? How does he explain that the majority of abortions are approved by doctors who have never even met their patients? Does he believe that Parliament and the law intended babies to be aborted after up to 40 weeks’ gestation on grounds such as having a cleft palate—breaking our laws on equality and discrimination? Does the noble Earl believe that Parliament wanted an estimated 4,700 girls to be aborted as just another choice, adding to the 160 million girls aborted worldwide?
Non-binding guidance is clearly not enough. Will he therefore amend the HSA1 and HSA4 forms to ensure that the two doctors required by law to authorise abortions only do so having directly asked whether the abortion is on the grounds of gender? On page 8 of its leaflet, Britain’s Abortion Law: What it Says, and Why, BPAS, which undertook 54,478 abortions last year with public money, asked:
“Is abortion for reasons of fetal sex illegal … ?”.
It then provides the answer, “No”. Why has the Minister not required BPAS to remove that advice? In a world in which we have such a low view of the intrinsic value of every life, what is being done to bring to book, using the Human Tissue Act, those National Health Service trusts that have been burning the human remains of aborted and miscarried babies to heat National Health Service hospitals?
These brief questions illustrate why the legislation needs, as the noble Baroness, Lady Knight, has told us today, careful review and amendment. Can the Minister think of a single comparable piece of legislation which has had such far-reaching consequences but has never been subject to post-legislative parliamentary scrutiny? Why does he think that is and will he ask the Secretary of State to consider allowing it?
Lord Campbell-Savours (Lab)
My Lords, we have half an hour left of this debate, and I wonder whether I could speak very briefly in the gap and ask a question.
NHS: NICE-appraised Medicines
Lord Alton of Liverpool Excerpts(11 years, 11 months ago)
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Earl Howe
My Lords, patients have a right under the NHS constitution to access clinically appropriate drugs and treatments recommended by NICE technology appraisals. That is a legal right. If a prescriber has failed to adhere to that, a clinical commissioning group is bound to find in the patient’s favour. However, there are clearly individual circumstances for each case that need to be looked at. The key is that the patient is entitled to expect a transparent and fair process where the reasons for a decision are published.
Lord Alton of Liverpool (CB)
Given that the noble Earl has just referred to the Question of the noble Lord, Lord Hunt, about access to new, innovative medicines, will he undertake to look at material which I have sent to him today from the Toronto-based mesothelioma research institute, which has developed new, innovative treatments for mesothelioma victims and may hold hope for some of the 2,200 who die of that horrific disease in this country every year?
Mesothelioma: Research Funding
Lord Alton of Liverpool Excerpts(12 years, 1 month ago)
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Lord Alton of Liverpool
To ask Her Majesty’s Government what progress has been made in the funding of research into mesothelioma.
Lord Alton of Liverpool (CB)
My Lords, today’s letter in the Daily Telegraph, signed by 13 Members of both Houses drawn from all parties, once again underlines the case for doing far more to find the causes of, and cures for, mesothelioma—a devastating disease which annually claims around 2,200 lives and which is likely to kill more than 50,000 more British people unless new treatments are found.
Let me begin by thanking my fellow signatories and all those taking part in today’s debate. This cause was one about which my good friend, the right honourable Paul Goggins, Labour Member of Parliament for Manchester Wythenshawe, felt deeply. He spoke extensively in Committee on the Mesothelioma Bill. He, and the Conservative Member of Parliament, Tracey Crouch, tabled amendments on Report, based on the amendments narrowly defeated in your Lordships’ House, which would have created a small levy to fund mesothelioma research. Just before the Christmas Recess, he and I once again beat a path to see Ministers to raise the plight of victims of mesothelioma. It was one of the last things that Paul did. After a massive stroke, which robbed him of life, and which robbed Parliament of a good and principled man, Paul was buried earlier today. Our thoughts are with his family. This debate, and the continuing fight for justice for victims of mesothelioma, and the need for sustained and adequately funded research, is the best tribute which we can offer him.
During our meeting at the Ministry of Justice with the noble Lord, Lord McNally, we asked about the review required by Section 48 of the Legal Aid, Sentencing and Punishment of Offenders Act 2012 into the effects on mesothelioma claims of its Sections 44 and 46. This brings us full circle, to the House of Lords debate, in which the House rejected the LASPO CFA reforms as sufficient to justify imposing legal costs on mesothelioma sufferers. When I tested the opinion of your Lordships’ House, noble Lords rejected the Government’s proposal that CFA reforms lifting damages for pain and suffering by 10% would compensate for the deduction of 25% of those same damages in success fees.
On 4 December, the Government issued a statement abandoning the consultation reforms in the face of overwhelming opposition from the claimant community, but stated that Sections 44 and 46 would be brought into force for mesothelioma sufferers, stating:
“The Government does not believe that the case has been made for mesothelioma cases to continue to be treated differently”.—[Official Report, 4/12/13; col WS 28.]
I refer the Minister to the recent Legal Ombudsman’s report on no-win no-fee agreements, stating that there is evidence of some lawyers failing to make clear the financial risks of conditional fee agreements and trying to pass on the risk to customers. That is precisely the situation your Lordships feared, and would not tolerate dying mesothelioma sufferers facing. That is why, on two occasions, we defeated those proposals and agreement was reached to have a review. However, as Mr Goggins and I made clear to the noble Lord, Lord McNally, there has been no review worthy of the name. The Government have simply restated their original argument.
The crucial point is that any scheme should deliver no less favourable compensation than is presently provided. Victims deserve nothing less. I hope that the Minister will comment on this. During our ministerial meeting, we linked this question to that of research because if cures and causes were identified, such issues would be otiose. In any event, investment in mesothelioma is in its own right desperately needed. The UK has the highest rate of the disease in the world. The annual number of mesothelioma deaths in the UK has nearly quadrupled in the last 30 years.
As I argued during the proceedings on the Mesothelioma Bill, it cannot be in anybody’s interests, not least that of the insurance companies, to pay out vast sums of money in compensation and to generate the full panoply of schemes, reviews, fees, CFAs and litigation, if causes and cures for mesothelioma could be identified. That is why, under the auspices of the British Lung Foundation, to which I pay great tribute, and with the assistance of the Department of Health, a handful of enlightened insurance companies—AXA, Aviva, RSA and Zurich—have been generously funding some of the research. However, as we know, that money has come to an end. A statutory scheme with a small levy on all companies would be both fairer and, perhaps more importantly, a sustained source of funds for research.
With this very small level of funding, the results have been impressive. New researchers from other areas of therapy have started to take an interest in mesothelioma, bringing with them new expertise and insights. Europe’s first mesothelioma tissue bank, which I think we will hear more about from the noble Lord, Lord Avebury, has been created to collect and store biological tissue from mesothelioma patients for use in research, and work is being funded to identify the genetic architecture of the disease. The evidence demonstrates beyond doubt that investment in mesothelioma is worth while. However, all the original funding has now been allocated and we look forward to hearing from the Minister what new funding will be forthcoming to continue this work.
A sustainable, reliable voluntary agreement involving all or most of the 150 firms with an active interest in the employers’ liability insurance market would be difficult and impractical. It is for that reason that the Government will ultimately have to intervene in order to make this funding compulsory and fair, so that it is spread across the entire industry. I was particularly concerned to hear a defensive Minister, Mike Penning, say during debate in the House of Commons in his role as Minister of State at the Department for Work and Pensions,
“I cannot break the deal”—[Official Report, Commons, 7/1/14; col. 204.] ,
implying that the deal to get the Mesothelioma Bill through both Houses prevented a statutory levy being secured. Happily, as they say, that is now history and I hope that Ministers will look again at this question. The Conservative Member of Parliament, Dr Sarah Wollaston, who supports the proposal for a statutory levy, has told me that she would particularly like to see scientific research which supports the development of better technologies for preventing exposure and the emerging technology for real-time detection of asbestos fibres, which could significantly reduce the risk of avoidable future cases.
These small sums would make a huge difference to the future of mesothelioma research in the UK and could potentially lead to cures, which would save tens of thousands of lives. It is estimated that 150 insurance firms are active in the market and that a small contribution from each could raise a vital £1.5 million each year for research.
I now want to say something about the alleged lack of quality of research applications. On several occasions, the Government have suggested that the lack of research is due to the poor quality of research proposals and not the funding available. Happily, this misconception has now been thoroughly debated in the other place and Ministers have conceded that that is not the case. During the debates in the Commons, Paul Goggins referred to the work of Stephen Holgate, MRC Clinical Professor of Immunopharmacology at Southampton University and chair of the British Lung Foundation’s scientific committee. Stephen Holgate says:
“It is simply not true to state the quality of mesothelioma research applications is not up to standard”.
From what he called the “very meagre starting point” of existing funding, he says that the work already undertaken,
“has been of an exceptionally high standard”.
Therefore, the practical and moral case for the industry having a duty to fund mesothelioma research, and the Government’s responsibility to ensure that it does, is abundantly clear. However, it is also clear that, even if some funding were to be made available through the voluntary route, it alone would not address the core issue at stake here, which is sustainability. Therefore, while welcome, sponsorship of specific projects in isolation will not be an appropriate way forward. It is incumbent on us to find one that is.
With the opportunity having passed for putting sustainable future funding for research in the Bill, I hope that the Minister will today give a concrete guarantee for a long-term, sustainable research programme. Such a scheme could be achieved either though securing long-term investment from the insurance industry via a voluntary scheme or by introducing, as I hope we ultimately will, a statutory measure making contributions from that industry to fund mesothelioma research compulsory. However, we also need a commitment today that the Government will make this happen, a date by which the Government will ensure that a scheme is in place and an assurance that such a scheme will be of the value of at least £1 million every year.
Mr John Edwards, consultant thoracic surgeon at Sheffield’s Department of Cardiothoracic Surgery, sums up the arguments in the following way: first, that government, industry and insurers do not want to fund the immense costs of treatment, benefits and litigation for mesothelioma; secondly, that patients and their families would much rather have their lives back than any benefits or compensation; thirdly, that researchers have plenty of ideas but not enough funding; and, fourthly, that current treatments may have benefits in palliation of symptoms and a modest increase in life expectancy but do not cure the disease. In other words, there would be huge benefits to the health of the nation if the insurance industry were to invest likewise in research.
Mr Alan McKenna, an academic who teaches law at the University of Kent, has seen several members of his family contract asbestos-related diseases. Last week, he launched an e-petition to the Government calling for more research into mesothelioma. In the House, a Private Member’s Bill will shortly be introduced.
I read last week of a journalist who was in her 50s and who, like her nine year-old daughter who had died a year earlier of mesothelioma, had succumbed to the same fatal disease. We are all aware, too, that there have been fatalities among family members of several senior colleagues in both Houses; just before today’s debate, the noble Lord, Lord West, told me that 10 of his contemporaries at Dartmouth have died of mesothelioma. These may be added to the thousands of men and women who contracted this killer disease simply by going to their place of work.
Earl Howe
My Lords, I note my noble friend’s question. My best answer to him at this stage is “one step at a time”. However, I can assure him that we will use our best endeavours to see a successful outcome from our discussions with the insurance industry. It is perhaps premature for me to go further at this stage.
Lord Alton of Liverpool
My Lords, I am grateful to the Minister, and I promise not to interrupt again, but can he provide further clarity about this £250,000? Is it drawn only from the four companies that have been referred to? How many of the 150 companies are contributing to it? What does it represent in terms of what is currently available from the industry?
Earl Howe
My Lords, as this is a time-limited debate, perhaps the noble Lord would accept my undertaking to write to him with those details. I am not sure, in fact, that I have them, because the letter, although extremely welcome, is quite brief in the detail it gives on the source of the funding.
Mesothelioma
Lord Alton of Liverpool Excerpts(12 years, 2 months ago)
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Lord Alton of Liverpool
To ask Her Majesty’s Government what funding has been secured for research into the causes of and potential cures of mesothelioma.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)
My Lords, the Government are fully committed to research into the causes of this dreadful disease and into potential treatments. The usual practice of the main public funders of health research is not to ring-fence funds for expenditure on particular diseases, and funding is available for high-quality research proposals. With its partners, the Department of Health is actively pursuing a package of measures that we believe will stimulate an increase in the level of research on mesothelioma.
Lord Alton of Liverpool (CB)
While thanking the noble Earl for his reply, does he recall the assurance he gave to the House, when an all-party amendment—which would have created a small, statutory levy to support mesothelioma funding—was defeated by 199 votes to 192, that insurance companies would voluntarily step up to the plate? Given that there have been 2,400 deaths from mesothelioma this year, with 60,000 anticipated over the next 25 years, and with the imminent ending of even the existing insurance industry funding, would it not be shameful to leave unfunded research that could save lives and prevent vast expenditure on compensation? The Mesothelioma Bill is now before another place, with an amendment supported by both Conservative and Labour Members of the House of Commons. Surely Ministers should be looking again at this practical way of finding a cure for this deadly disease.
Earl Howe
My Lords, I understand that the British Lung Foundation has had discussions with representatives of the insurance industry about extending the funding for research, but that no commitment has been made by the industry so far as to future funding. As I made clear during the debate, the issue holding back progress is not the lack of available funding—there is plenty of that—but the lack of sufficient high-quality research applications. The money previously donated by insurers is supporting valuable research, as the noble Lord, Lord Alton, has said. At the moment, a greater volume of mesothelioma research is supported by the Government, and we believe that the package of measures that I mentioned will stimulate an increase in that volume.
Abortion
Lord Alton of Liverpool Excerpts(12 years, 8 months ago)
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Earl Howe
My Lords, the Care Quality Commission has put in place procedures to identify pre-signing or other instances of non-compliance, and they are confident that these would now be picked up during inspections. However, my noble friend is right; there was a concern early last year that this pre-signing was happening. Since then, however, the CQC has been working directly with providers who are registered to provide termination of pregnancy services to ensure that they are complying with the requirements of the Act. It is beginning to explore how it can strengthen the registration process alongside its regular inspection activities. I therefore suggest to my noble friend that it is not a case of nothing having happened.
On sex selection, we have no evidence at all of gender-related abortions in the UK. Again, concerns were expressed about this in the press, but analysis has been done that shows that the UK birth ratio is within normal limits.
Lord Alton of Liverpool
My Lords, does the noble Earl accept that some cases were referred to the police last year where gender abortions were identified? Will he welcome the decision of Ranjit Bilkhu and a group of Asian women in this country to set up an organisation to challenge the attitude that it is permissible to take the life of an unborn child merely because of its gender? Has he noted the Private Member’s Bill of the Member of Parliament for Congleton, Mrs Fiona Bruce, and the Early Day Motion, signed by more than 50 Members of another place, drawing attention to the need at least to collect the data where the gender of a child is known so that we can truly know whether or not this phenomenon is occurring in this country as it does in many other parts of the world, where the three most dangerous words are, “It’s a girl.”?
Earl Howe
My Lords, I am aware of all the initiatives mentioned by the noble Lord. The issue of the sex selection of foetuses is, of course, extremely serious. However, as I mentioned in my earlier Answer, following extensive investigation and analysis we do not believe that there is any evidence that this is happening in the UK. That is the prime reason why we do not agree with the noble Lord that measures should be put in place to collect data regularly on the sex of the aborted foetus. Were we to do that it would require changes to legislation. It would also require changes to clinical practice, and it has ethical implications. I hope the noble Lord will understand that we have thought about this very carefully.
Abortion
Lord Alton of Liverpool Excerpts(13 years, 2 months ago)
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Earl Howe
My Lords, my noble friend raises some extremely important questions. The House will remember that reports came to light in February of pre-signing of the HSA1 forms—the approval forms that have to be signed by two doctors—and the CQC carried out a serious of unannounced inspections of all abortion providers in the light of that story to uncover any evidence of pre-signing. As a result, 14 NHS trusts were found to be non-compliant and clear evidence of pre-signing was identified. We await the outcome of investigations by the Metropolitan Police on that issue. Of course, as a department, we take it very seriously indeed.
On the issue of sex selection, my noble friend is absolutely right. The Act stipulates specific circumstances in which termination of pregnancy is permitted. Gender selection is not one of those circumstances. It is illegal for a practitioner to carry out an abortion for that reason alone, unless the certifying practitioners consider that an abortion is justified in relation to at least one of the Section 1(1) grounds in the 1967 Act. My noble friend will also be pleased to know that the Chief Medical Officer for England has written to all clinics and hospitals undertaking abortions to remind them of the provisions of the Abortion Act.
Lord Alton of Liverpool
My Lords, is the Minister familiar with a report that recently appeared in the Economist, which said that around 100 million abortions have taken place throughout the world on the basis of gender, which it calls “gendercide”? Does he not agree that in a country where routinely, every working day, there are some 600 legal abortions there is a real danger that, culturally, people imagine that it is simply a right to choose to take a life on whatever basis they believe it reasonable to do so? Can he therefore spell out again the illegality of taking the life of a child on the basis of its gender? Can he tell the House what penalties there will be when such actions occur and how long it will be before the police inquiries complete their course?
Earl Howe
In answer to the last question I have no firm information about when the police inquiries will complete their course. They have been ongoing for some months. The noble Lord, Lord Alton of Liverpool, is right to raise his concern, but I can again state emphatically that under the law of this country it is illegal to perform an abortion on grounds of sex selection alone. If evidence of such practices comes to light, the penalties are that the doctor or doctors concerned may be referred to the GMC. The Care Quality Commission will be called in and there will be the possibility of police investigation and prosecution resulting. This is not something that any provider of NHS-funded abortions should ever consider doing.
NHS: Liverpool Care Pathway Inquiry
Lord Alton of Liverpool Excerpts(13 years, 3 months ago)
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Earl Howe
My Lords, there is never any cause for complacency in a matter of this kind, and I can reassure my noble friend that the Government will keep this issue under review. At the same time, I hope she will allow me to respond in slightly more forthright terms than I normally do, because there has been an enormous amount of misreporting and misinformation around the Liverpool Care Pathway, which has been endorsed publicly in a consensus document by 22 of the leading professional organisations and patient organisations in this area, including Marie Curie. We cannot ignore that. As I mentioned in my Answer, some of those organisations are looking carefully at the reports to which my noble friend alluded. It is notable that not a single complaint has reached the regulators in this area, which I suggest indicates that there may be less substance to some of these stories than may first reach the eye. However, I emphasise that there is no complacency.
Lord Alton of Liverpool
My Lords, as the noble Earl comes to look at the consultation on the National Health Service constitution over the coming months, will he take the opportunity to look at the care pathway in Liverpool itself, where last week I was able to meet Professor John Ellershaw and those who devised the pathway? Given that 80,000 patients a year are treated on the pathway, does the Minister accept that it works very well for many of them; that while the philosophy is not the problem, the procedures used in some places have been; and that one of the principal concerns is dehydration? Does he agree that that is something to be looked at, as well as the level of training of those doctors who are responsible for the palliative care of people at the end of their lives?
Earl Howe
My Lords, I fully agree with the noble Lord. Training is integral to the care pathway, as is the need to consult the families of patients and, if possible, the patients themselves before a decision is taken to put them on the Liverpool Care Pathway. On the NHS constitution, I completely take the noble Lord’s point. The proposed change to the NHS constitution makes it absolutely clear that patients and their families and carers have the right to be fully involved in discussions and decisions about their care, including that at the end of life. We are clear that that should already be happening, but we understand from reports that that is not always the case. As regards end-of-life care, I think there is sometimes a taboo on discussing death and dying and press reports show how damaging that can be. I shall indeed take all the noble Lord’s points on board, particularly as regards nutrition and hydration.