Human Fertilisation and Embryology (Mitochondrial Donation) Regulations 2015

Lord Bishop of Carlisle Excerpts

Tuesday 24th February 2015 Lords Chamber

Finally, there is a most difficult question which has not been raised: the religious conviction of some that manipulation of embryos is basically wrong and against God’s will. I am afraid I have no answer to that; I am not privy to God’s will. However, I know that parents who have watched affected children suffer and in turn have suffered themselves are hoping and praying—yes, they are praying—that they will be able, some day, to have a child who is normal. What a boon that would be, and I very much look forward to us passing these regulations today.

[The Lord Bishop of Carlisle]

My Lords, for those among us—and I include myself—who are not scientists, this is a demanding topic. In fact, I guess that even those who are scientists do not always find it exactly straight- forward. A significant part of that complexity derives not from the difficulty of the science itself but from the different—sometimes diametrically opposite—things that we are told by people who have been studying and researching mitochondrial transfer for many years.

Like many others in your Lordships’ House, I have recently attended a number of presentations, drop-ins and seminars on this subject. I have also read through the many written representations that have been referred to and which most of us will have received. They mirror the speeches being made in this debate.

On the one hand, we are assured, as we have been today, that scientists are clear about both the safety and the efficacy of mitochondrial transfer. It is no different from giving a blood transfusion or changing the batteries, so there is no problem there. On the other hand, we are warned by scientists—not just the correspondents to whom my noble friend Lord Turnberg referred—that mitochondrial transfer is a form of genetic modification which does affect the germ line, albeit not the nucleus, and could have a potential impact on the traits of any children, and their children, born as a result of this procedure. Some suggest that this would involve crossing a key bioethical threshold that we could later regret, and we are all aware of the pressure that is being brought to bear on us from elsewhere in the world.

In addition to all that, from a purely ethical point of view, as my noble friend Lord Deben mentioned, one form of treatment, maternal spindle transfer, is for many people clearly preferable to the other type—pronuclear transfer. Unfortunately, as my noble friend Lord Patel pointed out, the spindle method is currently less stable, although that may change.

The so-called “genius” of the Church of England has always been its via media—the middle way—and that is where I find myself today. Over the last few years, we have consistently taken a fairly nuanced position on this subject. Despite some misleading press reports, we are not in principle opposed to mitochondrial transfer, and it makes a pleasant change for the church not to be against something. Indeed, I explained this to the Minister, Jane Ellison, before the debate in the other place and she referred to our conversation in her comments there. But, at the same time, we have always counselled a degree of caution, given the potential implications of this development. In particular, we have always argued that the research tests into safety—set out quite clearly as essential before any further move is made by no less than the HFEA expert panel in 2011— should be completed and reported before these regulations are approved. That has not yet happened. We are therefore disappointed by the element of rush now, which I guess could be occasioned by the forthcoming election. I was talking this morning with a GP friend, who said that she could not imagine any drug or treatment being authorised before all the necessary tests had been undertaken and reported. In this case, that clearly, according to the HFEA’s own recommendations, has not been achieved, even though, as we have been reminded, the research has of course been taking place for several years.

Like every other Member of your Lordships’ House, I am very keen to see help offered to couples who face the terrible prospect of a child born with mitochondrial disease. I also know which of the conflicting scientific viewpoints I would rather believe. To reiterate, both personally and as a representative of the Church of England I am basically very much in favour of this development. However, I cannot ignore the compelling arguments against pushing this through in haste, and for that reason I am minded to vote for the amendment proposed by the noble Lord, Lord Deben. I know that it is regarded by some as a wrecking amendment. I do not see, read or hear it in that way. I would hope that any Joint Committee’s work could be completed without undue delay. For the same reason, if we reach a Division on the initial Motion before us, I will feel compelled to abstain.

[Viscount Ridley (Con)]

My Lords, I must declare an interest in that much of the groundbreaking science of mitochondrial donation has happened at Newcastle University, where my wife also works, although in a different field. Also, some of the relevant work has taken place on the premises of the International Centre for Life in Newcastle, of which I am honorary president. I am also a fellow of the Academy of Medical Sciences.

I shall be as brief as I can. We have a duty to consider five simple questions. Is it legal? Is it safe? Is it necessary? Is it ethical? Is it rushed? It seems to me that, as the noble Lord, Lord Turnberg, said, we have clear evidence that it is legal for Parliament to enact these regulations. They are explicitly foreshadowed in the Human Fertilisation and Embryology Act 2008. They are not covered by the clinical trials directive. They are not eugenic, and therefore not in conflict with the EU Charter of Fundamental Rights.

Is it safe? We have heard that the safety and efficacy of both techniques have been established as far as is possible by exhaustive study, independent scrutiny and public consultation. The case of the Chinese example, as the noble Lord, Lord Patel, has said, is simply not relevant to this case. This was an obstetric disaster that happened to one woman and was a technique that was intended to cure infertility and had nothing to do with mitochondria anyway. As far as we can tell, the mitochondrial transplant element of that technique worked.

As for the infertility question, I have to say that I think my noble friend Lord Deben has misquoted a very distinguished scientist, Professor Robin Lovell-Badge. I was in the same meeting and I did not hear him say the words that the noble Lord said. He made the point that some techniques that are already legal and used probably perpetuate some forms of infertility. We therefore already accept that some techniques that are used may produce children who lead very happy lives but will themselves require assisted reproduction.

Incidentally, I completely agree with my noble friend Lord Deben that we should not argue from authority, that the consensus of scientists may sometimes be wrong and that we should make up our own minds. As always in science, however, it is the evidence, not the existence of a consensus, that convinces me that this is efficacious and safe.

Is mitochondrial donation necessary? If there is one thing that we have learnt from 30 years of in vitro fertilisation, it is that adoption is not a full alternative to conception. Were we right to give women assisted reproduction so that they could have their own children? Yes. Millions of happy mothers bear witness to that.

Is pre-implantation genetic diagnosis an alternative in this case? Often it is not, because it is more likely, as we have heard from the noble Lord, Lord Patel, because of heteroplasmy, to produce an afflicted child. I was also surprised to hear the noble Lord, Lord Deben, say that the reason we are going ahead with the techniques of maternal spindle transfer and pronuclear transfer is “about money”. I just do not think that is the case. It is very clear, as we have heard from the noble Lord, Lord Patel, and others, that there are very good reasons to go ahead with both these techniques.

Is it ethical? We do not, in the 21st century, have the luxury of deciding these things in a theological way. If we block an advance of this kind and it turns out that it could have eliminated suffering safely, then it is on our consciences in a way that it would not have been 30 years ago, when we could do nothing. In losing our impotence, we also lose our innocence. In other countries, this decision would be up to the regulator already. Here, uniquely, we have explicitly said that Parliament should first decide whether the regulator can take such cases, which is what we are deciding today.

Once Parliament has decided that mitochondrial donation is not likely to be unsafe, and the HFEA has judged that it is safe, it should be up to families to decide whether they wish to use it. It would be unethical for the state to deny them that choice.

We may become the first country to do mitochondrial donation, but there is nothing wrong with that. Britain has been the first with most biological breakthroughs, from natural selection to the double helix, from monoclonal antibodies to in vitro fertilisation. In every case, we look back and see that we did more good than bad as a result.

People with Learning Disabilities

Lord Bishop of Carlisle Excerpts

Thursday 12th June 2014 Lords Chamber

[The Lord Bishop of Carlisle]

My Lords, in this debate we are asking Her Majesty’s Government to do three things. The first is to recognise the situation that currently exists, as we have heard, with regard to people with learning disabilities. It has been pointed out that the situation is one of considerable inequality. Even when all the other factors have been taken into account, the disparity in mortality between people with and without learning difficulties is alarming. There does not appear to have been any significant change in this disparity over the past decade or more. The statistics speak for themselves. They have already been quoted more than once so I will not repeat them.

Of course, there have been some positive changes since the confidential inquiry, including some proactive adjustments and some sharing of best practice. However, as the main causes of premature mortality have been identified and are largely avoidable, there is a clear need for a change in healthcare culture—or, as the noble Lord, Lord Rix, called it, a change in attitude. The current quality and effectiveness of health and social care given to people with learning disabilities is deficient in various ways, including the provision made for attendance at clinic appointments and investigations. The issues are indeed complex, but not impossible. Recognising the problem must be the starting point for change at both national and local level.

Secondly, we are asking Her Majesty’s Government to collect some further information, not least through the central body that has been referred to. In particular, we need to know about the number and location of learning disability liaison nurses, who provide a wide range of vitally important services and support to people with learning disabilities. These nurses have been shown to make a huge difference, for instance by research done at St George’s Hospital, University of London. In some areas, they are key members of community learning disability teams. They provide advocacy and help to patients, advice to doctors and other healthcare staff, and assistance to carers and their families. One in 50 people in this country has a learning disability, but some trusts employ no learning disability nurses.

It would also be helpful to know why, as the noble Baronesses, Lady Hollins and Lady Andrews, observed, less than a quarter of those with learning disabilities in England are recorded as such on GP registers. That has implications for critical referrals to specialists, as well as to palliative care services. There seems to be no system at the moment to identify individuals with learning disabilities who have a life-limiting condition.

Thirdly, we are asking Her Majesty’s Government to take immediate action in certain areas. They include ensuring that healthcare staff are adequately trained in caring for those with learning disabilities—a point made by the noble Lord, Lord Ribeiro. As it happens, that is another potential role for learning disability liaison nurses and a further argument in favour of having as many of them as possible, and at least one per trust. It is vital to ensure that there is no discriminatory thinking about quality of life, and to provide those with learning disabilities with equal access to healthcare.

The second area for action is informing patients, carers and families about the existence of community learning disability teams where they exist. Many are currently unaware of the potential help that they so desperately need and which could be available to them.

A third area for action involves promoting advocacy of various kinds for people with learning disabilities not only by healthcare professionals but by the voluntary sector. I have recently been involved with the commission looking into the effects of welfare reform in Cumbria. One of our principal findings has been that advocacy—usually unpaid—for some of the most vulnerable people in our society is crucial to their mental and material well-being. I think that the noble Lord, Lord Ribeiro confirmed that the same applies to those with learning disabilities who are in need of healthcare.

A fourth area for action is inviting both clients and carers to be involved in the design and monitoring of services—the kind of services to which the noble Lord, Lord Rix, referred: patient passports and annual health checks. I know that NICE is already looking at providing that with its guideline development groups, and NHS England wants to do the same with consultative and participative care planning.

The Department of Health has already set several provisional goals, including closing the mortality gap between those with and without learning disabilities within three years. This is an absolutely excellent aspiration. A large part of the purpose of this debate is to encourage its delivery. As the noble Baroness, Lady Hollins, pointed out, updates involving data collection on premature mortality in those with learning disabilities have been promised, but they have not yet been produced. Further delay means more people with learning disabilities dying prematurely and, in some cases, avoidably, so I hope that we may soon see some tangible action in support of those who desperately need it.