Abortion (Disability Equality) Bill [HL]

Lord Alton of Liverpool Excerpts

Committee: 1st sitting (Hansard): House of Lords
Friday 27th January 2017 Lords Chamber

[Lord Mackay of Clashfern (Con)]

My Lords, the idea of having a review of the effect of legislation strikes me as a very good proposition in general, and in particular in relation to this Bill. Obviously, as the noble Baroness has explained, the precise consequences of the Bill, which I congratulate my noble friend on bringing forward, are not very easy to see, because there are overlapping provisions in the Abortion Act which might deal with some aspects at least of the particular circumstances that the noble Baroness referred to. In my judgment, this is a useful amendment and a similar principle might well apply in other legislation as well.

[Lord Alton of Liverpool (CB)]

My Lords, I agree with the noble and learned Lord and welcome the amendment from the noble Baroness. It strikes me that in this 50th anniversary year of the original legislation, which has led to some 8 million abortions, it would be a good thing if something like the amendment moved by the noble Baroness were attached to the original legislation. There is no sunset clause in it and it has never been reviewed, which I find staggering considering that 50 years have passed.

The amendment that the noble Baroness referred to, which was passed in 1990, extended the provisions of the 1967 legislation to enable the abortion of a baby with a disability, right up to and even during birth. As I pointed out at Second Reading in support of the Bill introduced by the noble Lord, Lord Shinkwin, this has led in some cases to abortion on grounds such as cleft palate, club foot and harelip. Indeed, 90% of all babies with Down’s syndrome, which the noble Baroness referred to, are now routinely aborted in this country. This is pretty close to eugenics and we need to consider much more deeply the issues that relate to the legislation governing the amendment that has been moved.

I sometimes think that instead of the tramlines on which we often find ourselves, with deeply held views—I respect the position that the noble Baroness takes; it is different from my own but I respect it—we need to go far more deeply into these questions. I am grateful, therefore, to the noble Lord, Lord Shinkwin, for giving us the opportunity to have this debate in your Lordships’ House.

Young People: Self-Harm

Lord Alton of Liverpool Excerpts

Tuesday 6th December 2016 Lords Chamber

[Lord Prior of Brampton]

Last year, the rate of spend by CCGs on mental health went up by 8.6%, compared to 3.7% across the board, so the money is starting to get through. The fact is, though, that there are nooks and crannies in our NHS—which we all love—where we have fundamentally let people down for many years. The issue of self-harm and the suicide risk that derives from self-harm is a very black hole at the heart of the NHS.

[Lord Alton of Liverpool (CB)]

My Lords, is not the ultimate tragedy for any parent the suicide of their child? Has the Minister seen or talked to ministerial colleagues about the suicide sites on the internet and the chat rooms that are often visited by young people who may be facing depression, mental illness or low levels of self-esteem, and the terrible tragedies that have occurred as a result of a visit to those sites? Is not there more that can be done by the Government to force those providers and servers to stop making such sites available on the internet?

[Lord Prior of Brampton]

Unquestionably, there is more that can be done. Some of those sites, certainly some of the pornographic sites, are being addressed in the Digital Economy Bill that is going through the House at the moment. But we are working with the national council and the Samaritans, which in turn are talking to people at Google and YouTube and the digital providers to see what we can do in this area. We have also commissioned a new prevalence study to look at cyberbullying and all those sorts of issues, which will, unfortunately, not produce its results until 2018. So we are very much apprised of this, but, frankly, there is always more that we can do.

Mesothelioma

Lord Alton of Liverpool Excerpts

Thursday 27th October 2016 Grand Committee

[Lord Alton of Liverpool (CB)]

My Lords, I am delighted to be able to support the noble Lord, Lord Wills. It gives me the chance to say how much I have appreciated working with him, the noble Lord, Lord Giddens, and other noble Lords in trying to push this issue up the list of political priorities. An indication that the message is bearing fruit was contained in the former Chancellor’s Budget announcement on 16 March that £5 million would be approved for a national mesothelioma centre, which I greatly welcome.

This is also a chance to say that after the Second Reading of my Private Member’s Bill on mesothelioma research the Minister has been unstinting in his efforts to draw together the medical and scientific community, the insurance industry and diverse political interests. It is good to be able to put on record my appreciation of his commitment and engagement. That Private Member’s Bill emerged from a narrowly defeated amendment in your Lordships’ House that would have required the more than 120 insurance companies to contribute to mesothelioma research. The former Minister told the House that he was confident that the four insurance companies that were then voluntarily supporting research would be joined by others. The sad reality, as we have heard, is that the four fell to two, Aviva and Zurich.

As the noble Baroness, Lady Warwick, just told us, insurance companies that represent employers whose employees were exposed to fatal asbestos must recognise their moral obligation, but it is also in their own self-interest to help find the causes of and cures for mesothelioma—a public health disaster that should never have happened. I recently heard from a patient support group that is concerned by media reports that Companies House proposes to destroy defunct company files after a period of five years. Perhaps the Minister will either say a word about this or agree to write to me.

The admirable British Lung Foundation says that we are now at a point in mesothelioma research where we can see real potential. For example, Dr Sarah Martin at Barts Cancer Institute has found that 50% of mesotheliomas lose the enzyme ASS1, which makes the amino acid arginine. As these mesotheliomas depend on a steady supply of arginine from the bloodstream and other cells to grow, Dr Martin is exploring the potential of using existing drugs to block the flow of arginine to these cells, in turn starving them.

Resourcing this and innovatory adult stem cell work, which the noble Lord, Lord Giddens, and I heard about more than two years ago and which we were told would require £2.5 million to bring to clinical trials, is imperative in a country that has the highest recorded incidence of mesothelioma in the world, with 40,000 recorded deaths already, and, as we have heard, a further 2,500 deaths annually. One in five work-related deaths are attributed to mesothelioma. What is the Government’s current estimate of the cumulative number of British people who will die of mesothelioma over the next 30 years? Perhaps we can also be told how many of the 3,000 cancer nurse specialists specialise in mesothelioma care.

With tens of thousands destined to succumb to this fatal disease, it greatly disturbs me that we have no national programme, plan or timetable for the removal of asbestos from our environment, although, by contrast, we have devised one for the Palace of Westminster. Significant quantities of asbestos remain in our homes, workplaces and public buildings, not least in the schools referred to by my noble friend Lady Finlay, and there is a growing incidence of mesothelioma among schoolteachers. As my noble friend said, we should carefully consider the effects on children.

When the Minister replies, I hope that he will refer to the need for a national strategy and to what he might be able to do to draw cross-departmental Ministers together to consider what it should consist of. I hope too that he will look at properly resourced research in the way that the noble Lord, Lord Wills, described, as well as at an examination within his own department of the significant variations in the levels of care, treatment and support, which have been referred to during this short debate.

Mental Health: Young People

Lord Alton of Liverpool Excerpts

Tuesday 11th October 2016 Lords Chamber

[Lord Prior of Brampton]

My Lords, this is a difficult issue. As the noble Lord will know, a key part of the five-year forward view is to take resources out of acute physical care, out of acute hospitals, so that there is more available for mental health care, community care and primary care. It is very difficult to do that. As the noble Lord will know, we have been trying to do this since 2000 but all that has happened is that more and more of the available resource has been sucked into the big acute hospitals. Getting that resource out and into the community and into mental health is extremely difficult. The STP process is going on at the moment. We are committed to seeing more money going into mental health, but I acknowledge the difficulties.

[Lord Alton of Liverpool (CB)]

My Lords, will the noble Lord confirm that last year we saw the highest level of teenage suicides in 17 years? Welcome though the review of the 2012 strategy is, will the noble Lord say that, as well as looking at issues such as family breakdown, he will look at issues such as cyberbullying? Did he see the case only last week of an 11 year-old boy who committed suicide? His mother said that he had been subjected to cruel and overwhelming social-media and cyber bullying. Will the review examine these links with breakdowns in mental health and teenage suicide, and the very poor state of mental health provision inside the National Health Service for young people?

[Lord Prior of Brampton]

My Lords, on the noble Lord’s last point, the very poor state of mental health provision in the NHS has been with us since 1948, if not earlier. We are trying to address this problem but there is a huge way to go. I acknowledge absolutely the difficulties to which the noble Lord, Lord Hunt, also alluded. Professor Appleby, in his report which came out in May of this year, cites cyberbullying as one of a number of factors. They tend to be multifactorial. When someone takes their own life it is normally the end result of often years of misery and a whole range of things. It could have to do with sexuality, bullying, family breakdown or bereavement. This is not an easy situation to solve. Last year, 145 people under the age of 20 took their own lives. This is a tragedy for them and, of course, for their families as well.

Down’s Syndrome: Do Not Resuscitate Orders

Lord Alton of Liverpool Excerpts

Tuesday 15th December 2015 Lords Chamber

Asked by

[Lord Alton of Liverpool]

To ask Her Majesty’s Government what assessment they have made of East Kent Hospitals University NHS Trust’s decision to list Down’s syndrome as a reason to issue a Do Not Resuscitate order to a patient.

[The Parliamentary Under-Secretary of State, Department of Health (Lord Prior of Brampton) (Con)]

The department expects trusts to have local policies on resuscitation, based on expert professional guidance. Such guidance has been published jointly by the British Medical Association, the Resuscitation Council and the Royal College of Nursing. All resuscitation decisions must be tailored to the individual circumstances of the patient. For patients who lack capacity, the Mental Capacity Act requires a decision in their best interests, taking account of their known wishes, beliefs and values.

[Lord Alton of Liverpool (CB)]

My Lords, in considering Mencap’s estimate that 1,200 people with learning difficulties die needlessly in NHS care every year, will the Minister look at the inspiring work of the Blue Apple Theatre company, which includes actors with Down’s syndrome performing either “Hamlet” or their play “Living Without Fear”, which was staged in Mr Speaker’s House, and then consider how best we can counter a slide into eugenics, discrimination and non-resuscitation orders, as in the case of Andrew Waters, and look for ways to promote positive and life-affirming attitudes towards people with Down’s syndrome?

[Lord Prior of Brampton]

My Lords, perhaps I could address first the particular issue of Andrew Waters. The doctor who signed the DNR order was a junior doctor who made a mistake. It was a misjudgement, he apologised for that mistake, and he has learnt from it by using his experience to teach other doctors how to deal with similar issues. It is important to make that statement first—the reaction of that junior doctor was the right one, having made that mistake. The noble Lord mentioned the Blue Apple Theatre company. He was kind enough to send me a copy of some of the work that it does, which illustrates that people with Down’s syndrome can have a very full, useful, good and happy life, and their lives should be valued just as highly as the life of any other person.

Health

Lord Alton of Liverpool Excerpts

Thursday 26th November 2015 Lords Chamber

[Lord Alton of Liverpool (CB)]

My Lords, it is a particular pleasure to congratulate the noble Lord, Lord Foster of Bath, on his exemplary and cogent speech, not least because, having served together in another place, we share many common interests and experiences, not least that we were part of that exclusive group of former Chief Whips.

The noble Lord was born in Lancashire, in Preston, worked as a science teacher in Kent, and was an elected member of Avon County Council, on which he became his group’s leader. Elected to the House of Commons in 1992, he was fortunate enough to represent the beautiful world heritage city of Bath until standing down earlier this year. A diligent, respected and hard-working Member of the House of Commons, at various times the noble Lord served as his party’s spokesman on education, environment, work and pensions, transport, and culture, media and sport. Like many members of the noble Lord’s party, responsibilities came thick and fast for him. As we heard, in the coalition Government he served as a Minister in the Department for Communities and Local Government. Today, the whole House will want to welcome him. Judging by the quality of his excellent maiden speech, we have a rising star in the making again. We have good reason to look forward to hearing the noble Lord on many occasions in the future.

It was a Liverpool physician, Dr Benjamin Moore, who, in 1910, in The Dawn of the Health Age, is credited as probably the first to use the words “National Health Service”. When it was founded in 1948, Aneurin Bevan declared that it would,

“last as long as there are folk left with the faith to fight for it”.

Bevan saw the NHS as a bulwark against fear. Although we all still have the faith to fight for it, the world in which it functions is fundamentally different, with dramatically changed demographics of population and disease. The backdrop against which today’s debate is being held is a sobering one, from overspending to strikes and demoralised health workers. A consultant recently told me, “Currently, more and more is being asked of us, but we are being given less and less resources to achieve it. There is increasing exhaustion as every bit of spare capacity in every respect is stretched”. That is leading to demoralisation and disaffection. A health-creating society must value its health workers.

It may be a National Health Service but there are endless disparities and inequalities within its system, and modern England is simply too diverse for a model that insists one size should fit all. This is true of our attitude to lifestyle as well as to care itself. For example, smoking rates during pregnancy range from 2% in west London to 28% in Blackpool. Malnutrition has reappeared in some places but not others, with 193 episodes of malnutrition at Salford over a 12-month period, while even the day on which you are admitted to a hospital can affect your chances of survival, with Imperial College publishing research that babies born at weekends in hospitals in England have a greater chance of dying than those born on weekdays. End-of-life care and hospice provision are brilliant in some parts of the country and patchy at best in others. The noble Baroness, Lady Williams, reminded us of our equally patchy approach to mental health, a point that was also touched on by the noble Lord, Lord Foster of Bath, in his maiden speech.

A few weeks ago the Minister gave me a Written Answer about prescriptions for antidepressants and confirmed that since 1991 more than 660 million antidepressants—at a cost of nearly £6 billion—have been prescribed by the NHS, with year-on-year figures increasing exponentially. If the overuse of antibiotics is creating cause for concern—and it is—should we not also be exercised by the overuse of antidepressants and our failure to address toxic loneliness and isolation? For instance, it is said that around 1 million elderly people do not see a friend or a neighbour during an average week. This has an inevitable detrimental effect on health. Like operations for obesity, this is another disturbing example of putting a poultice on a problem rather than attacking the root causes.

In the search for a healthy society, my bottom line would be that healthy relationships create a healthy society. It is especially important for the vulnerable to know that they are valued, as the noble Baroness, Lady Campbell, reminded us earlier. It is no good if our attitude or treatment say otherwise. With around 700,000 people in Britain with degenerative diseases such as Alzheimer’s and predictions that there will be 1 million dementia sufferers by 2026, we cannot value this by cost alone. It has to be how we see people themselves.

If we started from a different place, putting much greater emphasis on our responsibilities to society and to one another, rather than slogans about choice and autonomy, we would create a much healthier, happier and more resilient society. We can smoke, drink, neglect our health or use lethal injections to get rid of the unwanted because we assume that medicine will fix everything and take care of us. But that is simply not so, which is why my noble friend was so right to initiate today’s debate.

Mesothelioma (Amendment) Bill [HL]

Lord Alton of Liverpool Excerpts

Friday 20th November 2015 Lords Chamber

Moved by

[Lord Alton of Liverpool]

That the Bill be now read a second time.

[Lord Alton of Liverpool (CB)]

My Lords, in moving the Second Reading of this Bill, I first thank all noble Lords who will speak today, others who have been in touch to indicate their support for a measure which enjoys all-party support and, in particular, the noble Lords, Lord Giddens and Lord Wills, who have given a great deal of their time in recent months as we have endeavoured to promote interest in research into a disease which, according to the Government, will claim a further 60,000 British lives over the next three decades. This represents the highest rate of mesothelioma anywhere in the world. I also thank Penny Woods and her team at the British Lung Foundation for their support for the Bill and the Minister the noble Lord, Lord Prior, and his officials for meeting with the noble Lord, Lord Giddens, and myself yesterday. My noble friend Lord Patel is among a number of noble Lords who cannot be here today but who wish to record their support for the Bill.

When your Lordships debated the causes and absence of cures for mesothelioma during the passage of the Mesothelioma Act 2014, my proposal to provide a statutory levy on the insurance industry to fund research was defeated by a slender margin of seven votes—199 to 192. When the same amendment was moved in the Commons, it was defeated by 266 to 226. Several noble Lords and Members of another place agreed entirely with the principle of insurance industry funding for mesothelioma research but expressed a preference for contributions to be secured on a voluntary basis. In both Houses, Ministers gave assurances that a new voluntary research regime would be established. At that time, just four out of 150 insurance companies were voluntary contributors. Far from stepping up to the plate, that number has been reduced to just two. It is to that issue that I return this morning.

Let me begin by saying something about the disease itself. Mesothelioma is an occupationally-related disease. It is an invasive type of lung cancer, primarily caused by prior exposure to asbestos. There is currently no cure. Patients often experience complex, debilitating symptoms and most die within 12 months of diagnosis. Simply put, men and women went to work and were negligently exposed to asbestos when it was known that asbestos caused great harm. As long ago as 1965, the Newhouse and Thompson report provided shocking evidence that a brief exposure to asbestos could result in mesothelioma 50 years after exposure yet scandalously, and with utter contempt for life and health, men and women continued to be exposed to asbestos with little or no protection for decades after that report was made public. Nearly 40,000 British people have died from mesothelioma from past exposures to asbestos and some 60,000 will die from it in the years to come. The UK has the highest incidence of mesothelioma worldwide. Society owes a great debt to those who went to work, often in hard and heavy industries, and built the economy of this country only to suffer terrible consequences.

Our partial and overdue response was the very welcome legislation promoted by the Government in 2014, and we must all continue to insist on proper and commensurate support for those families blighted by the curse of this disease. But surely our most important objective must be to find safe ways of eliminating the danger and to find cures for mesothelioma. Sometimes—and wrongly—it is dismissed as a legacy disease which will simply run its course, claiming about 2,500 lives every year. Despite that, the legacy will be with us in this country for at least 30 years. Neither here nor in other countries is this just a legacy disease. It is quite possible that comparable diseases will emerge from other environmental sources. I repeat that we have the highest rate of the disease in the world. Mortality rates are increasing and have more than quadrupled in the past 30 years. Last year, the Independent newspaper reported that fresh figures from the Health and Safety Executive showed a 10% increase in mesothelioma cases and that the number will continue to rise until at least 2020.

There is another mistaken belief that mesothelioma is a disease confined to the tunnellers, masons and manual workers whose cases I first came in contact with 30 years ago as a young Member of Parliament in Liverpool. This occupational disease affects people from diverse and, as we will learn in the course of this debate, unpredictable backgrounds. Members of your Lordships’ House have loved ones who have died of mesothelioma. One noble Lord described the death of his wife, a Minister described the death of his father and another noble Lord described how his sister died after washing the dungarees of her husband. The former First Sea Lord, the noble Lord, Lord West, who is involved in graduation ceremonies at his university in Southampton today but who supports the Bill, described how many of his cohort at Dartmouth had played snowballs with asbestos and how some had died of mesothelioma in later years. According to the London School of Hygiene & Tropical Medicine, more than 2,500 Royal Navy veterans will die from mesothelioma in the next three decades.

In parenthesis, let me say that the failure of the 2014 Act to include provision for compensation for our servicemen who die of mesothelioma is a glaring anomaly. The British Legion, the Royal Navy & Royal Marines Charity, the Royal Navy Royal Marines Widows’ Association, the Royal Naval Association and others all support calls for change. A 63 year-old civilian could expect to receive around £180,000 in compensation under the 2014 Act, yet one year’s worth of war pension paid the maximum rate for a non-married naval veteran amounts to just £31,000. Veterans should be offered compensation at least equal to that which the courts and the Government have decided that civilians deserve. The unequal treatment of our service men and women amounts to a serious breach of the Armed Forces covenant, which is supposed to ensure that veterans are not disadvantaged because of their service. I hope that the Government will use the Bill to rectify that anomaly, that injustice. When the Prime Minister was recently questioned about our obligations to our servicemen, he promised to look at the issue again. When the Minister replies, will he tell us whether that promise now stands? He knows, because I told him yesterday, that I raised it directly with the noble Earl, Lord Howe, who is now the Minister responsible in the Ministry of Defence. I have not as yet had a reply, and I hope that the Minister will be able to give information on that issue.

That this is not simply a disease of the past is a point underlined by the National Union of Teachers, which states that asbestos remains present in about 86% of schools, leading to an estimated 200 to 300 adult deaths a year. Expert advice given to the House of Commons Select Committee on Education estimates that up to 300 former pupils a year die of the disease following contact with asbestos in schools. Jenny Darby, who is aged 71 and who was a science teacher, has contracted mesothelioma. She says that when the ceiling tiles came off in the classrooms,

“the asbestos would come down. I used to stick them back up almost every day”.

Christine Blower, general secretary of the NUT, says:

“There is still no recognition that asbestos is a serious problem for schools. Shamefully, the Government’s most recent survey of school buildings deliberately excluded asbestos”.

Will the Minister tell us what progress the asbestos in schools steering group has made in identifying the dangers in our schools? What research are we carrying out to identify the dangers in other public buildings such as hospitals—and, indeed, in buildings such as the one where we are meeting today? What advice based on science do we give about disturbing or removing asbestos?

As well as better understanding the causes of mesothelioma, we must do much more to find cures. Apart from preventing great suffering and illness, a breakthrough would remove the need for compensation schemes. It is surely therefore in everyone’s interest to do that. Throughout the debates on the 2014 legislation, I was highly critical of the paltry sums of money which have gone into mesothelioma research. Relatively little is spent on that research in the UK, measured against other cancers of comparable mortality. For example, in 2014 the National Cancer Research Institute figures showed that just £820,000 was invested in mesothelioma research by its partners. That is significantly lower than the £9.9 million and £5.3 million spent respectively on skin cancer—melanoma and myeloma, two cancers with similar mortality. Per death, £3,700 is invested for melanoma, whereas for mesothelioma it is only £480.

Data released by the Department of Health and Department for Business, Innovation and Skills in response to Parliamentary Questions also suggests that statutory investment in mesothelioma research is very low. However, speaking for the Government, the noble Lord, Lord Faulks, said:

“It is absolutely not the case that there is insufficient funding for research. As I have said more than once, the case is that, at the moment, there is not a suitable number of applications for research. The funding is very much there”.

I cannot agree with that, but I can agree with the remark that:

“There needs to be a certainty that the money is there but the top-level researchers also need to be aware of it so that the money and the level of the research capability are brought together”.—[Official Report, 9/12/14; cols. 1711-12.]

There is neither adequate money nor certainty. The noble Lord, Lord Freud, was right when he said:

“My feedback from the Department of Health and Sally Davies”—

Dame Sally Davies, the Chief Medical Officer—

“is that they are aware that it is odd that so little is spent on this disease”.—[Official Report, 5/6/13; GC 252.]

I pursued this inconsistency with the noble Lord, Lord Faulks, and he wrote to me to say:

“In the last five financial years, the MRC and NICR have received just over twenty applications for grants or fellowships that relate to research on mesothelioma. Of these eight applications were successful resulting in an average success rate of 40%”.

Are the Government really saying that the other 60% of those applications had no merit, and how does this square with the assertion that there have been insufficient applications?

My amendment to the Mesothelioma Act would have secured sustainable and fair funding by charging a small levy on insurance firms. During our debate in 2013, my noble friend Lord Kakkar, from whom we will hear later, said that there had been no strategic approach towards tackling mesothelioma. He told the House about the role of MesobanK and its global significance. He referred to the possible breakthroughs that genetic research would produce, but said that such research would need to be kick-started with adequate funding.

Arising from our debate, the Government held talks with the Association of British Insurers to see whether a voluntary funding arrangement could be reached. As I said, there are about 150 insurance companies active in the employers’ liability insurance market, and a small contribution from each could transform mesothelioma research. In January of this year, it was announced that just two of those companies—Aviva and Zurich—would donate a combined £1 million over two years to the BLF’s mesothelioma research programme. This was two fewer companies than had been involved previously. Although I commend Aviva and Zurich, £500,000 a year for just two years does not come close to addressing the multi-million pound funding deficit experienced by mesothelioma research. It does not deliver sustainable funding; it relies on the good will of two companies, which themselves complain that the load is not being fairly shared, and nor does it deliver the promise made to the House when we voted on a statutory provision. It is unfair and unrealistic to ask two firms to be responsible for 100% of the insurance industry’s contribution to mesothelioma research. Any long-term funding solution needs to see this responsibility shared more widely, which is what this Bill ensures.

During the passage of the 2014 Bill, Ministers said that the compensation levy on the insurance industry would be set at 3% of the gross written premium. In fact, what Mr Penning, the Minister in another place, said was:

“Three per cent. is 3% and we have no intention of moving away from it”.—[Official Report, Commons, Mesothelioma Public Bill Committee, 12/12/13; col. 117.]

This time last year I asked—and I ask it again today—why it has been set at 2.2% when that original 3% undertaking was given by the Government? The effect is to short-change mesothelioma sufferers. What is the shortfall from the insurance industry worth? That was a question that I raised yesterday with the Minister. It certainly will not be a small sum of money.

Lastly, what of the research possibilities themselves? The noble Lords, Lord Giddens and Lord Wills, have met with some of the most outstanding researchers in the field, and I am sure that they will describe in greater detail the possibilities that are opening up and the exciting chance to create a global hub-and-spoke national mesothelioma research institute. That was something that we flagged up with the Minister yesterday. The British Lung Foundation has been able to instigate research projects which have opened up extraordinary possibilities. By working with researchers in other areas of therapy, it has gained new expertise and insights. MesobanK, Europe’s first mesothelioma tissue bank, has been created to collect and store biological tissue for use in research, and work is being funded to identify the genetic architecture of the disease.

Dr Peter Campbell, who is conducting research, identifying which genes are the most important targets for mutations in mesothelioma, says:

“Only by understanding its basic biology will we be able to develop a new generation of drugs targeted at the specific abnormalities of mesothelioma cells. This requires sustained investment at all levels of mesothelioma research, from basic genetics and cell biology through drug development to clinical trials”.

He is sequencing the DNA for all 20,000 genes in the human genome from 75 mesothelioma samples and comparing this sequence to normal blood samples from the same patients.

Meanwhile, Dr Elizabeth Sage has done some promising work, too. I met her with the noble Lords, Lord Giddens, Lord Wills, and Lord Saatchi. She told us that she is the only person working anywhere in the world on an innovatory treatment called TRAIL—a drug linked to stem cells, which can lead to the killing off of all mesothelioma cancer cells, which may have application in humans with adult stem cells. She told us that it would take £2.5 million to move from the animal stage, with the mice that she has been working on, to clinical trials. That does not seem an outrageous sum of money when measured against the potential outcomes and saving of some of those 60,000 lives to which I referred.

To take all of this work forward requires sustained funding, and it is simply not true to suggest that there are not first-class researchers and research projects waiting to be funded. We do not have to accept that another 60,000 British people will die of this disease; we do not have to accept the suffering, human misery and hopelessness which accompanies diagnosis. Mesothelioma research funding is currently so low that the temptation is to undertake work on other diseases where funding is secure and sustained. But we can do something about that. It simply is not good enough to rely on ad hoc contributions from insurers, charitable donations and modest government funding. This unreliable approach jeopardises the possibilities of life-saving breakthroughs. The stark numbers of people that this dreadful disease kills and the wholly inadequate funding that has gone to address and ameliorate it speak for themselves. That is why this Bill is needed. I beg to move.

--- Later in debate ---

[Lord Prior of Brampton]

Perhaps I can take that away and come back to the House. I think it will be difficult to come up with precise figures, to be honest, because of the difficulty in allocating some of the more generic research to particular areas. I think that we can encapsulate some of the comments made by the noble Lords, Lord Winston and Lord Wills, and come back to the House with a more thought through, considered figure.

[Lord Alton of Liverpool]

I can see that the Minister wants to move on from the issue of funding, but before he does I should point out that the House has been given figures. It is important to record that in our debate, because they are figures that his predecessor, the noble Earl, Lord Howe, gave the House in reply to a Parliamentary Question tabled by my noble friend Lord Wigley, and referred to by my noble friend Lady Finlay earlier. The figures in the reply to Parliamentary Question HL5852 show that funding from the NIHR on,

“research centres and units, and research training awards on mesothelioma research”,

as the Minister said, in 2006-7 was £0.0 million; in 2007-8 was £0.0 million; in 2008-9 was £0.0 million; in 2009-10 was £0.0 million; in 2010-11 was £0.0 million; in 2011-12 was £0.0 million; in 2012-13 was £0.2 million; and, in 2014, was £0.4 million. Those are the Government’s own figures, which have already been given to Parliament.

[Lord Prior of Brampton]

I think that we are into some definitional issues here, to be honest, from what the noble Lord, Lord Winston, said, and from the figures that I gave earlier, which I am not making up—they are figures that have been given to me. We should come back with some greater clarification and perhaps some closer definition of what the funding figures are.

My impression, although it may be wrong, is that the essential problem is not a lack of funding but a lack of sufficient research applications. Of course, I accept that there is a connection between the two, which I shall perhaps come back to in a minute. The MRC received no mesothelioma applications in 2014-15, and only one in the current year. I want to clarify and stress that the work being funded is of high quality, consequent to high-quality applications. In response to questions raised by the noble Lord, Lord Kakkar, and others, the Government have taken measures to stimulate an increase in the level of research activity. Patients, carers, clinicians, academics and funders have worked in partnership with the James Lind Alliance to identify what the priorities in research should be.

I imagine that some noble Lords will have read the report by the James Lind Alliance, but for those who have not I can say that, following a survey and a workshop, the top 10 mesothelioma research priorities were announced in December 2014, and the NIHR published a final report from the priority-setting partnership in July. In advance of the identification of research questions by this partnership, the NIHR highlighted to the research community that it wanted to encourage research applications in mesothelioma. The NIHR subsequently invited researchers to apply for research funding, in particular to address the research questions identified by the partnership. Eight NIHR programmes participated in this themed call. Fifteen individual applications have been received, of which two have been approved for funding to date, two are under review, and 11 have been rejected. Some noble Lords may think that that is a very high level of rejection, but it is broadly consistent with the overall funding rate for applications to NIHR programmes, which is roughly about one in five.

In addition, the NIHR Research Design Service continues to be able to help prospective applicants to develop competitive research proposals. This service is well-established and has 10 regional bases across England. It supports researchers to develop and design high-quality proposals for submission to NIHR itself and to other national, peer-reviewed funding competitions for applied health or social care research.

The Government are not predisposed to support the Bill, but there is something that we ought to consider—perhaps outside the Chamber. We believe that the existing process for accessing research grants works well; we do not believe that money is the real shortage. It is interesting to note that the Government’s spend on research for medicine is a little over £1 billion—a very significant sum—but the Government are not keen on hypothecated grants for research. However, I have been thinking about this very carefully over the last couple of days, and the noble Lord, Lord Alton, touched on it slightly obliquely at the beginning, but it is an important point.

When the 2014 Bill went through Parliament, it was felt by the Department for Work and Pensions that the highest levy that could be taken from the insurers without forcing them to pass it on through higher premiums into industry was 3%. I understand that there is a shortfall between that 3% and the actual level of claims being made. I wonder whether the 1% that is being asked for in this Bill could be funded through the shortfall within the existing levy. That might be an avenue worth exploring. I say that because at the moment the fact that we are relying on two insurance companies is not equitable. Why should Zurich and Norwich Union cough up £1 million when other employers’ liability insurers are not contributing? This needs further discussion, but I wonder whether there is a way through this and whether we could not use the shortfall in the existing levy.

--- Later in debate ---

[Lord Alton of Liverpool]

My Lords, this has been at times a deeply moving debate, with some very stirring personal stories being told to your Lordships’ House. It has also been thoughtful, amazingly well informed and, as the noble Lord, Lord Hunt of Kings Heath, said earlier, powerful at times in the way that we have addressed this deeply troubling issue. Some of the contributions, such as that of the noble Lord, Lord Winston, have been slightly above my pay grade, but I shall read them afterwards with great interest, as I know will many people, particularly in the asbestos victim support groups, the British Lung Foundation and others who campaign up and down the country on these issues.

I assure the Minister, who has given us what could be a small opening of the door on this question—I will come back to that later—that I brought no knuckle-dusters and I have no knives. Despite the curtain-raiser that the noble Lord, Lord McNally, gave us earlier, the reality is that when he was Minister at the Ministry of Justice he was incredibly helpful on this question when the LASPO legislation was before us. I still bear some of the scars from that period. Yes, I will persist in presenting this, though not just by myself; there are many people, as the noble Lord knows, not the least of whom was the late Member of Parliament, Paul Goggins, who took up this cause so strongly in the other place. As a curtain-raiser to assure the Minister that the issue is not going to go away, I can tell the House that Paul Goggins’s successor in the other place, Mike Kane MP, will be introducing a comparable Bill in the House of Commons in January.

This issue will not go away, and Members of both Houses want progress to be made. It may be that the formula in this particular Bill or the way we have expressed it is not exactly what needs to be done and there may be other ways of doing it, but it is important that something is done about it. That formidable alliance brought a defeat for the Government during the proceedings of LASPO. It was ping-ponged up and down the corridors, and was a very good example of how by concentrating on an issue which had not even been debated at earlier stages in the Commons, your Lordships were able to bring about change. The noble Lord, Lord McNally, said that perhaps the missing tail-piece in the legislation was a commitment to funding. Perhaps, therefore, we are right to keep returning to that issue until something is done about it.

The noble Lord, Lord McKenzie of Luton, was very much the godfather of the compensation arrangements that were introduced in the Mesothelioma Act. He reminded us that we are not seeking research whatever the quality, and that we need to make this a priority area.

The noble Lord, Lord Avebury, has been raising this issue for more than 40 years. I always like to think of him as the inspiration for some of the things I try to do in politics. Being just a chip off his block is sufficient. He reminded us that there has been woefully inadequate funding, no continuity, and only a fraction of the necessary resources.

My noble friend Lady Finlay, one of five medics of a very distinguished nature who have contributed to our debate today, said that this is an epidemic that is looming—not a historic disease—and, as many noble Lords have said, it has worldwide implications. She reminded us of the risks to our children, a point returned to by the Minister in his reply to the debate.

The noble Lord, Lord Winston, told us the story of Herbie, whom he had filmed during his death from mesothelioma, which drew to the public’s attention more about this often unknown and unfamiliar disease. Even the name is difficult for people to get around their tongue, let alone to understand its nature. To shine a light on these things, as we have done in your Lordships’ House today or through the media, is always an important thing to do.

The noble Lord, Lord Kakkar, said that this is a particularly nasty disease which we understand so little about. He reminded us of the crossover between this and so many other diseases and of the importance of personalised, precision medicine. He also reminded us of what happened during the debate on the Mesothelioma Act on the issue of precedent.

I want to say a word about precedent and levies, because the Minister himself touched on this. I refer to the HGV Road User Levy Act, the Gambling Act levy, the fossil fuel levy, the Gas Levy Act 1981, and the levy on the pig industry to eradicate Aujeszky’s disease. Under Section 24 of the Betting, Gaming and Lotteries Act the levy board has a power to place a charge on all bookmakers involved in horserace betting, and Parliament requires a levy to be spent for the purpose of improving the breed of horses. If levies are good enough for dealing with horse breeding or pig disease or indeed in this legislation itself—it is hypothecated legislation and that is the whole point: there is a levy, which the noble Lord referred to, which is to raise money to deal with compensation—we can refer to plenty of precedents if we want to follow this path.

The noble Lord, Lord Ribeiro, reminded us of the story of Steve McQueen, which helped to give this whole issue some public profile, but he also said that it should not just fall to two insurance companies to have to deal with this—a point which has been reiterated throughout the debate. He said that the levy could be the missing piece of the puzzle and that only research can answer the questions in that puzzle.

The noble Lord, Lord Wills, described this as a terrible and remorseless disease and reminded us of the moral duty of the insurance industry, a point returned to by the noble Lord, Lord Howarth, in his contribution. The noble Lord, Lord Wills, said that there is a clear ethical, humanitarian and financial imperative, and talked about the contrast between the £3 million for research and the £68 billion a year paid out by the industry.

The noble Lord, Lord Freyberg, and other noble Lords, have referred to their own personal stories, which I found deeply moving. They were a reminder to us all that this disease is not just confined to those who worked in heavy industries in the past. I felt challenged by what he had to say, particularly about the “toxic and ultimately futile” therapies which are currently available. Surely we can do better than that. The noble Lord, Lord Giddens, told us to raise our game and raise our sights. I am always excited when I talk to the noble Lord about the huge possibilities from supercomputers, from the collection of data and the worldwide networking that we can be involved in. The noble Lord, Lord Cormack, said that I had shown “youthful enthusiasm” in bringing forward this measure.

[Lord McNally]

Only in the Lords—

[Lord Alton of Liverpool]

It is only in the House of Lords that you could possibly be accused of youthful enthusiasm. I think it was Robert Kennedy who said that youth is not a time of life, it is a state of mind, a temper of the will, a quality of the imagination. Your Lordships all have plenty of that, to a very high degree, although the noble Lord, Lord McNally, reminded me that we first met in 1979 as we took the oath. We were both a lot younger then. We have sung in the same choir on many occasions over the years and I was very pleased that we were doing so again.

The noble Lord, Lord Cormack, said that we have a moral duty to future generations. This point was reiterated by the noble Lord, Lord Campbell-Savours, who referred to what happened to his father and the implications for those who continue to work on our ships, in the Merchant Navy or Royal Navy, today. My noble friend Lady Murphy told us about the 2.8 month survival rate and how nothing had improved from the time that her late father died, leaving a widow of 37 years. I will take that story away and remember it. The contrast with dementia research, to which she and the noble Lord, Lord Hunt, referred, is incredibly important.

The noble Lord, Lord Hunt, talked about the case for legislation as a backstop, and I agree that one does not want to resort to it as the first thing. This was the missing tail-piece when we had the chance to legislate, but the only way that parliamentarians can keep issues of this kind before the public, and the Government, is by issuing Bills of this sort. He said that the House is looking for something more. The Minister said that there may be a shortfall within the existing levy and, if so, it might be something we could use towards the research that is so desperately needed. I would be very happy to participate in talks with the noble Lord, and the noble Lord, Lord Freud, and I am sure other noble Lords who have been following this would want to be invited too.

There was argument about the figures. I quote from the British Lung Foundation:

“Contrary to some claims made previously in the House, the quality of research applications has been very high—indeed the number of applications funded by the British Lung Foundation would have been a third higher, had more funding been available. Although previous BLF and insurer research has made some progress and is a cause for celebration, it is frustrating to think how much further along we’d be towards new, effective treatments had mesothelioma research funding been on a par with funding for other cancers. It is sobering to consider how many lives that might already have cost”.

I also asked about the possibility of overestimates, a point referred to by the noble Lord, Lord Winston. On the contribution being made at the moment by the MRC, the BLF says:

“We believe this is a significant overestimate. Figures provided to us by the National Cancer Research Institute … this year state that spending by all NCRI partners—which includes both the NIHR and MRC, as well as other major funders of cancer research—totalled just £820,000 over the same period”.

There is dispute but these figures have been given by the British Lung Foundation, which is at the very centre of these arguments and follows the issues day by day.

I hope the Minister will clarify those questions as we proceed. He has also promised to return to the issues of veterans, which was raised today, and schools. My noble friend Lady Finlay raised the issue of Wales and the noble Lord, Lord Hunt, pressed the Minister further for information about that. We look forward to the correspondence which will precede the debate in another place in January. I know that our colleagues there will read the speeches that have been made today with a great deal of interest. I am deeply indebted to all those who have participated and I ask the House to give the Bill a Second Reading.

Bill read a second time and committed to a Committee of the Whole House.

Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015

Lord Alton of Liverpool Excerpts

Tuesday 24th February 2015 Lords Chamber

[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.

--- Later in debate ---

Finally, I do not believe—in spite of what we have heard this evening—that this technology threatens the fabric of our society in the slightest bit. It does not threaten the fabric of our society; on the contrary, in a way it protects it because what we are doing is recognising our limits by accepting regulation. We have not said that we are going to go ahead with this; we will have to see what the regulatory authority wants. The noble Earl knows perfectly well that I have some misgivings about regulation in certain areas, but none at all about this. I think that will be shared universally by my colleagues, some of whom are listening to this debate.

[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]

May I comment on that, since the noble Lord refers to me?

[Lord Alton of Liverpool]

I did actually ask the noble Lord, Lord Winston.

[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.

--- Later in debate ---

[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—

[Lord Maginnis of Drumglass (Ind UU)]

My Lords—

--- Later in debate ---

[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.

[A noble Baroness]

So it should.

[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

Tuesday 16th December 2014 Lords Chamber

[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?

[Earl Howe]

I am sure that noble Lords around the House will form their own conclusions on the information provided by the noble Lord, Lord Alton, but I do give that undertaking.

Ebola

Lord Alton of Liverpool Excerpts

Monday 13th October 2014 Lords Chamber

[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.