§ 5.13 p.m.
§ Lord Kennet rose to call attention to the threats posed and the benefits offered to humankind by human genetic manipulation and assisted procreation; and to move for Papers.
§ The noble Lord said: My Lords, the second Motion to emerge from the ballot for debate today draws attention to a part of the current revolution in molecular biology. I believe that that revolution will require continuous hard thought from the world's parliaments quite soon.
§ I shall call it the "bio-revolution" for short. Revolutions in science, and the new technologies which follow them, are giddyingly familiar. They have become endemic in the last half century. This one, because it is about what human bodies and minds are made of, will touch every aspect of human life. We Parliamentarians here, and throughout the world, and governments, singly and in groups, need to think now. Every day we read of a new discovery, a new process, a new policy proposal put forward or rescinded. The field is vast and foggy, but we are unavoidably moving into it and we must get our bearings. Better: we must probably create our bearings as we go.1596
§ The bio-revolution is changing the relations between people, between societies and between generations. Not surprisingly, there are calls for legislation and regulation, some of which have been met, and there will be many more that must be met, if possible coherently.
§ The last scientific revolution to raise issues on this scale and with this existential charge was the revolution in nuclear physics. That one changed relations between states, and between states and their citizens. The demand for regulation or legislation was only partly met because there were, and still are, no supranational structures which could legislate or regulate in the common interest. Nor were there even within states the structures to foresee the problems. Clearing up after the nuclear military both in the United States and in the ex-Soviet Union has become a mega-burden to which we mostly shut our eyes. I mention all that because we must do better this time. The nuclear revolution gave us the ability to wipe ourselves out. Species suicide became possible. This one will give us the power to change ourselves physically. Species revision will become possible.
§ Germline gene therapy is not yet with us, and the relevant government-appointed advisory committee has advised that at least for the moment it should not be attempted. That is obviously right, but it is of course bolting the stable door before the horse is born. It is my view that when germline therapy does become attractive, which may be quite soon, society will not reject it out of hand.
§ Our first care must be for the relationship between the available knowledge about human genetics and sufficient knowledge to make massive application of genetic therapy legitimate. Will genetic practitioners know enough to say, hand on heart, "I know what I am doing, unto the third and fourth generation of them that I am creating or altering, and it will be good. I need to know no more"?
§ Genetic screening is already enabling us to know or, if we prefer, to refuse to know, how likely we or our children are to die of some disease or be incapacitated by it at a certain age. Self-knowledge, and thus personal identity, is being fundamentally changed for some people, and will be for many more. In the future gene mapping will, roughly speaking, enable us to remake others and to generate some of us in test-tubes.
Relations between person and person are also changing; between potential parents; and between them and their potential children; between natural and nurturing parents; and the genetic and the non-genetic children of the same parents; between natural persons and donated cousins or even sibs of whose existence the natural persons will sometimes not know. Most recently, an extraordinary new person has been advertised: a person developed from ovarian tissue taken from an aborted foetus. The relation between such people and the established chain of being, even including IVF donor people, is an extraordinary challenge to the imagination. They would know nothing of their mothers except that their grandmothers killed them. The most reverend Primate the Archbishop of York has said well of this:
What sort of society is it that kills its unwanted foetuses and then turns them into parents?
§ Relations between single persons and collective persons will also be changed by the knowledge obtained from genetic screening, which will no doubt usually be correct but cannot hope to be always. These will include the individual's relations with the medical profession, with his or her employer, with the private sector insurance and mortgage companies, and with the community itself as provider of health care and national insurance, and as the maker of law and its enforcer: in short, between the individual and the state.
§ Then also relations will be changed between entire categories of persons: medicine and the state, medicine and industry, and among industrial interests, especially pharmaceutical companies. These last will be investing large sums on basic and applied research, and on testing their product, and will want to patent what they develop as they go along, and profit from their investment. Those huge transactions will fertilise the existing breeding ground for injustice which lies between the developed and the developing world wherever modern medicine comes on the scene. The companies have a right to know, and to know soon, what society wants them to do, and will allow them to do.
§ Among the institutions which the bio-revolution looks like sweeping away is the present patent system. There are three things in that system which are incompatible with the biotechnology of the future. First: the distinction between discovery and invention will have to be redefined; secondly, so will the distinction between matter and process; and, thirdly, the present multiple and incompatible patent jurisdictions are going to have to be swept away in favour of a single world one. I lack both time and knowledge to go further into this.
§ At every interface in those relations, and many others there lives a layer, a complex folded layer, of ethical realities and political puzzles, many of which will in due course require legislation or regulation at one level or another: national, continental or global.
§ Now, germline therapy will quite soon be possible, and then we shall really have to think what we want. Perhaps the discussion will take this form.
§ The benefits could be colossal: within a generation congenital disease could be entirely eliminated from those populations which can afford it. But it also poses two very alarming risks. First, the whole thing might go physically wrong; and, secondly, it might be applied towards a wrong goal.
§ Let us take them in turn: going physically wrong. The purpose will be to make ill people well, and to cause more babies to be born well. That always has been, is, and always will be the purpose of medicine. In the past, plenty of promising medical innovations have proved unsuccessful, and the result has been that ill people have not been made well. Bad luck. Try again. What's so different? So say the progressivists.
§ The natural pietists say, "Germline therapy is indeed fundamentally different. Every time in this bio-revolution that a veil has been stripped from between us and understanding, seven new veils have appeared. What mutations will the envisaged genetic manipulation trigger?" The complexity of the human genome, and the 1598 unknown and perhaps unknowable relationships between different genes and groups of genes, do not suggest that theoretical knowledge will ever be sufficient to justify the undertaking. Animal analogies look flimsier than ever at that level. Pragmatic knowledge will not be obtainable until too late. Even in the simpler and less contentious field of IVF, which is already with us, the people born have not yet shown whether their fertility is normal, because they are not fruit-flies. One expert in this field fears that the use of inadequate sperm in artificial insemination (husband) may produce a disaster in the next generation: "At present", she says, "no one is much looking at that".
§ So the natural pietists say, "May not a treated germline surprise the practitioner, or rather the practitioner's great grandchildren, by suddenly going berserk and producing —if not actually monsters—at least unexpected, and possibly unidentifiable, results?"
§ The answer of the progressivists is twofold: there is no reason to think that could happen, and if it did one could just change that germline back to where it started. I have actually heard that.
That is the physical risk. Then there is the social risk of the wrong goal being adopted, the spectre of eugenics. For Galton, eugenics was,
the scientific study of the biological and social factors which improve or impair the inborn qualities of human beings".
But the word has now come to mean the ruthless and destructive use of the results of that study: it has become a boo-word, and I suppose it has got to remain one.
§ There are slopes of all sorts in this discussion, and they are of varying slipperiness. The argument: that on a slippery slope one can stop whenever one likes has one great weakness: the number of occasions when people who ought to have stopped did not.
§ We already have with us the flippant demand for children of a particular colouring or sex, and the increasingly sinister gradations of pre-conception selection, intra-uterine cull, and finally, in India and China and probably elsewhere, mass female infanticide.
§ Galton himself went too far in his writings. So did Sir Winston Churchill. The United States went too far in practice in the 1920s and 1930s, and in the 1930s and 1940s Germany provided that great example of the slippery slope which still dominates this debate, as it surely must for as long as it is remembered. Everybody, medical scientist or not, must remember that, medical scientists in Germany, individuals like us, succumbed to the persuasion.
§ In China at the moment, the compulsory sterilisation of "congenitally retarded people" is reported to be a matter of course under local law in some poorer provinces, including Gansu. A draft national law which included enforced abortion has recently been withdrawn, but in favour of what remains to be seen. The rhetoric has been that of the palaeo-eugenics preached in the West at the beginning of this century. In the meantime, provincial law continues as before.
§ It is thus in the presence of a living tradition of eugenics in the second worst sense that we have to decide what to do. Of course, the worst sense of all would be the deliberate creation of a population of uncomplaining helots, à la Brave New World. It seems 1599 to me unavoidable that different countries will do different things; that tolerance and common sense require us to admit that this is so, and that detestation of what we perceive as deliberate or blasphemous cruelty will place yet another strain on our flimsy mechanisms for keeping peace between states. We still have the weapons with which to commit species suicide.
§ Now let us look again at the bright side. How would it be if in the far future we were offered the elimination of seasickness at will, or alcoholism? Or even more striking, the removal of violence from among the modes of human action, without side effects?
§ What would be demanded of the power structures of that future time? Would those offers from science be ones which democracy could refuse? In such a world, what would the power structures be, anyhow? It is obvious that they will depend in part on what decisions are being taken in this very field. They will not necessarily be democratic.
§ Another problem: if it is acceptable to improve the health of a family or a population, is it not also acceptable to improve its intelligence? It is harder to define intelligence than to define health, but many would agree that gross differences of intelligence exist and are not difficult to perceive, and that the dumbest often have the worst time on this earth.
§ Since in general there cannot be advance evidence of the long-term effects of a given piece of gene therapy, the right course of action is one which takes account of that fact. You will not get the evidence. The uncertainty analysis in the case of fallout from nuclear weapons tests was, we now know, all wrong. Harm was caused. Looking into the double helix was a bit like looking into the nucleus of the atom. Shall we have learned that technology is not innocent until proved guilty, that it can no longer be allowed the benefit of the doubt? Uncertainty analysis should now be the branch of study which receives most attention and help from Parliaments and governments.
§ Some new problems are already with us. One is the vast increase in the numbers of people who may know, or may choose not to know, that their children in general, or each in particular, have a given likelihood of getting some disease before birth, at birth, in childhood, or in middle age.
§ There are also large-scale social problems coming soon that to the best of my knowledge are not being addressed. How many of us will be deemed truly healthy when we are all screened for everything? A definition of "the normal" would arise, deviation from which might be grounds for abortion in the case of a foetus. Procrustean therapies of various kinds would bring the eccentric and the not-quite-normal among us within acceptable bounds.
§ Will the taxpayers not want to be sure that those whose education and training they fund will last beyond 25? Will a new sub-class arise—those who are going to develop conditions that are held to designate them unemployable, especially in an economy where unemployment may finally be admitted to be a tool of 1600 policy, and therefore not worth educating because they will not survive long enough to provide "value for money"?
§ Well, legislation caps all, and it is now urgent to bring the skills of moral philosophy more directly to bear on it. Moral philosophy is still emerging, at least in this country, from a half century of neglect. There are many in Parliament who are contributing greatly to that emergence but there are some who still believe that ethics does not exist, or that it is something quite other than what it is. They are therefore left at the mercy of their individual apprehensions of common sense.
§ Examples are before us every day. It sometimes seems that the whole fabric of Western thinking about what we ought to do and how we ought to live, from the pre-Socratics on, has been judged inconvenient, perhaps as standing in the way of modern goals. These goals were first, in the 1930s, science, which was supposed to be real in a way that ethics could not be; and more recently the pursuit of wealth in economic freedom, which alone has been supposed to constitute a real good. If that is one's scale of values then of course the only way to derive policy from judgment is by deep excision of the offending matter of ethics from personal consciousness.
As an example of a mistaken account of ethics I offer the following from a recent report on the regulation of clinical procedures commissioned by the Government:
Ethics are the moral convictions of thoughtful, conscientious and informed people [deriving] from a compound of natural philosophy and religion".
The text goes on to say that natural philosophy and religion are intuitive and that "rules and duties" are derived from "utilitarian principles".
This seems to be a way of saying that ethics are fuzzy beliefs entertained by good-natured people. One cannot say this if one has any acquaintance with ethics as part of philosophy in general, and understands that philosophy is, in the words of R.G. Collingwood,
organised and systematic thought directed towards the discovery of truths concerning a definite subject-matter".
In the case of ethics, that sort of thought is quite difficult, but there are people who can do it.
§ National ethics committees are a convenient method of bringing such people to the fore. The non-governmental Nuffield Council on Bioethics is a good beginning. If properly constituted, such committees will have a membership which is able to juxtapose conflicting insights in moral philosophy, wring out the elements of pseudo-conflict and agree on a submission or opinion which brings out the true conflicts in measured and comprehensible terms. Committees tackling ethical or ethico-legal problems without moral philosophers on board—and in this country they are the rule not the exception—are like committees designing bridges without an engineer.
§ It would be wrong to rely only on chosen specialist bodies; we should also consult the people directly. In this field Denmark is, among the European Union countries, undoubtedly the most experienced. The consensus conference system, set up and operated by the Danish Parliament, is simple in purpose and highly sophisticated in execution. All our countries and their parliaments would be the better for learning from it. A 1601 very first demonstration run of the same kind is even now being prepared in this country. It is led by the Science Museum, and good luck to it. Something similar on crime was published in the last Independent on Sunday, and very interesting it was. But these are not devised by Parliament for the use of Parliament in legislation, as they should be.
§ Alongside the consensus conference, we should also consider various more traditionally British or American alternatives which are now being canvassed in the pharmaceutical industry and elsewhere. One of these is to have something like a planning inquiry when any alarming new treatment or product is proposed. Progressivists and natural pietists would put their cases under neutral chairmanship, and all would be widely reported.
§ The pharmaceutical industry is multinational in its location, in its shareholders and in its markets, and the question of European harmonisation is already posing itself. Is harmonisation necessary? So far each country has gone its own way, but the European Commission, the Council of Europe, and UNESCO are all in the process of examining the issues.
§ Certain questions present themselves for discussion. What are the pros and cons of a plurality of regimes as opposed to a single regime, considered irrespective of where they might be; as for instance Britain, Western Europe, East Asia, the world and so on?
§ Are the following among the advantages of the present plurality: that humanity is naturally diverse and its traditions, including ethical traditions, various; that more people in total may be pleased by diverse local regimes than would he pleased by a single one; that it is more important for smaller exclusive groups to feel at home with their laws than for larger inclusive ones to do so; and that opinion varies over time in a different way from country to country?
§ And are the following among the advantages of a single, harmonised, European regime: the convenience of pharmaceutical companies developing the relevant substances and treatments; a single regulatory approach to licensing arrangements with countries outside Europe; the preclusion of "medical tourism"—that is, going to a country with a more relaxed attitude and buying the treatment that you want there, if you can afford it; and, lastly, freeing resources, including ingenuity, to bring the benefits of the bio-revolution to the third world? All these things will give rise to their own extremely complicated debates, and so will others there is no time for. It does seem likely that we should not hurry.
§ Yet how can we not hurry, given the huge breadth of the scientific programmes and their rushing acceleration, epitomised by the human genome programme? The coexistence of the scientific hare and the democratic tortoise is potentially tragic. We need consensus conferencing, pseudo-planning inquiries, national ethics committees, a Select Committee of this House, European committees, world committees, and probably everything in between as well.
§ Lord Annan
My Lords, before the noble Lords sits down will he agree with three propositions? The first is 1602 that for the past 30 years no one has accepted what A.J. Ayer said about ethics. The second is that each year a torrent of books from the most reputable philosophers on ethics falls from the presses. The third is that no ore believes that utilitarian ethics are right today; they are as démodé as the crinoline.
§ Lord Kennet
My Lords, it will take a moment to answer the noble Lord. Many people still believe that A.J. Ayer is right, not including reputable philosophers. That is my point. Ask teachers. Is utilitarianism still on the menu? The quotation that I gave shows clearly that it is. I beg to move for Papers.
§ 5.38 p.m.
§ Viscount Craigavon
My Lords, I listened with great attention to the noble Lord, Lord Kennel. He raised in a dense form enough to occupy people for a good day's seminar. I shall be interested to know what the Minister has to say on behalf of the Government or whether the Government have much to say in reply to the type of comments that the noble Lord made. Having said that, I do not object to the use of the Chamber in that way, but I am afraid that some people may say that it is not quite fair to raise so many hares and so many small points and problems without giving us an opportunity to pursue them, simply because of the density of the noble Lord's argument. However, I am sure that people will read the noble Lord's speech.
I was certainly intimidated by the words of the Motion when deciding whether to speak. Had I not put my name down to speak, I should certainly have felt intimidated about speaking, having heard the noble Lord's speech. We are fortunate to have present the noble Baroness, Lady Warnock, although she is not going to speak in the debate. However, I am sure that she will listen carefully to what is said.
I personally feel barely qualified to address only a very small part of the large canvas which the noble Lord, Lord Kennet, has offered us. I do not believe that this is the appropriate time at which to try to deal with what we shall have an opportunity to debate in June on Clause 138 of the Criminal Justice and Public Order Bill —namely, the prohibition of the use of embryo germ cells—except in so far as it illustrates general principles.
My particular interest in this field is that I was involved in the passage of the embryo legislation in this House in 1990, assisted in no small pact by an organisation called Progress. Following the successful passing of the Bill, I became one of three trustees of an offspring charity called the Progress Educational Trust. Our chairman is Professor Marcus Pembrey and our aim is to disseminate knowledge of work which is done in that area, at various levels, on a very modest scale in comparison with the terms used by the noble Lord, Lord Kennet.
It is our underlying belief that in trying to encourage an informed public debate, we need an informed public. The same principle applies just as much to the other areas covered by the Motion before us. Therefore, education will be one of my main themes.
One of the target areas for information is obviously students and young people, if only to ensure that future 1603 generations are better equipped to understand and make decisions. In my opinion, the scope and extent of what we are discussing today has eventual implications of Darwinian proportions. It always continues to astonish me how, in our education system and background assumptions about life, we still, after all these years, manage to avoid many of the uncomfortable consequences of Darwinian theory; that is, accepting as we do, rationally, that his theories are 90-something percent. correct.
With that record, how are we to face the mirror which is held up to us by the unravelling of our genetic code, with all the implications and decisions which follow? My guess is that there will be no tidy or simple answers, just as in this debate. The fact that, largely, we cannot control what happens in other countries adds to the confusion of any of our best intentions.
With all that uncertainty surrounding our beliefs, generated by new genetic knowledge of ourselves and by new possibilities, it may be that the largely pragmatic approach that we are already taking is best.
We have set up organisations outside direct government control which must be responsive to developments and must respect and educate public opinion. To carry out their tasks successfully, they must also have the confidence of the scientists and doctors whom they are regulating, licensing or supervising. I am thinking of the HFEA—the Human Fertilisation and Embryology Authority, the Gene Therapy Advisory Committee working with local ethical committees or, in a more discursive role, the Nuffield Council on Bioethics. The Nuffield's first annual report contains an excellent summary of the various bodies in this field.
All those bodies can operate successfully provided that they have the trust of the professionals involved, who in turn are prepared to be open about what they are doing. That may be partly responsible for the lead and respect which has developed for the work done in this country, particularly in IVF and related areas. We have an enviable record and we should endeavour to keep that lead.
It is against that background that I find the recent insertion of Clause 138 into the Criminal Justice and Public Order Bill by a Conservative Back Bencher to be such a jarring anomaly, especially in view of the massive consultation exercise in which the HFEA is currently engaged on that subject. That exercise and its scale would seem to me to be a model of how this kind of debate should and can proceed. I know that other countries have studied the HFEA as a possible model for how to proceed.
In terms of the subject of the debate, what can we say about the human genome project? It has been compared in scope with some of the great human endeavours. It will proceed, whatever we feel or say here, with the inevitability of some Greek drama, like some fate unravelling itself before us. If the knowledge gained brings us closer down to earth, so be it.
As if to pacify the fates, I understand that something between 3 per cent. and 5 per cent. of the funds being put up for the project (depending on the country) are to be spent on social and ethical issues. Taken as a 1604 percentage of the estimated 3 billion dollar cost of the project, that should be one of the costliest debates of all time. I hope that it will be worth it.
To come down to earth, some noble Lords may have received a letter from the Genetic Interest Group which represents over 100 charities. It tells of the existence of over 4,000 different genetic disorders which result in about 15,000 babies being born every year with a significant degree of disability and, in some cases, the prospect of early death. As we know, most possible treatment is still distant, but we can share the feeling that there is hope and we should be grateful that some progress is being made.
As against that, although the prospect of "designer" babies can be conjured up, their possibility, even if permitted, is fortunately so remote because most physical traits are expected to involve more than one gene. It is very often the freak examples in this field which catch the headlines and worry the public unjustifiably. Literary imagination sometimes adds to that, to say nothing of the media. Over the longer term, various forms of education and discussion should be able to provide the informed public opinion needed for informed debate and decisions.
I hope that part of that debate can be encouraged—either generally or on special topics—by organisations such as the Nuffield Council on Bioethics. Its recent working party on genetic screening was able to discuss the practical and ethical effects of what may emerge both in the short and long term; for example, it dealt with issues such as consent, confidentiality, employment and insurance. That is far from an enclave of medical self-interest, as membership of the working parties are balanced by laymen as well as experts. The present excellent standing and authority of that council should only be encouraged.
Finally, I suggest that there are no simple answers in this field. Our best hope is that over the years we shall find the ability to adapt both individually and as a society to any awkward truths which we may discover.
§ 5.48 p.m.
§ The Lord Bishop of Oxford
My Lords, the Motion so helpfully tabled by the noble Lord, Lord Kennet, refers to the threats posed by genetic manipulation and assisted procreation. Indeed, there are particular threats and understandable fears, as the noble Lord, Lord Kennet, stressed so eloquently. But in the minds of some people, there is an underlying feeling or fear that we should not be engaged at all in such ambitious projects; that they somehow go against our nature. Therefore, first, I should like to affirm that it is our vocation and responsibility as human beings to intervene in the processes of nature for the health and well being of humanity.
The scientific creativity and ingenuity with which we have been endowed and through which we can intervene is part of our nature. Therefore, it is an essential aspect of our God-given nature to manipulate and shape natural processes. Professor Gordon Dunstan has written that, in the popular mind, the job of the moralist is,to see what the scientists are up to and tell them to stop it".1605 On the contrary, he argues, research science, bestriding two worlds—the known and the unknown—creating undreamed of possibilities, with the thought that a new fact might perhaps modify or remedy a known ill, is an exhilarating prospect. As the professor puts it:The moralist can share that exhilaration if he stands near enough to the scientist to learn a little of what he is doing".Since the discovery of the double helical structure of DNA in 1953 by James Watson, Francis Crick and Maurice Wilkins, described as one of the greatest discoveries ever made, there has, as we are all aware, been a staggering advance in genetics. By 1991, a four year-old girl had become the first patient to undergo a successful gene transplant in the treatment of a fatal genetic disorder. Now, the human genome project sets out to map and sequence the 3 billion base players within the human genome by the early years of the next century. Exhilarating stuff indeed!
I should like to stress the practical benefits of genetic research, especially in relation to genetic disorders still to be remedied, of which cystic fibrosis is only the best known. Due to vaccination and antibiotics, together with a better diet, the major infectious diseases have declined. That means that disorders with a genetic basis have grown in relative importance. In northern Europe populations, around 1 per cent. to 2 per cent. of all births are associated with some form of genetic disability or developmental disorder having a strong genetic component. A study of children admitted to a paediatric hospital in Montreal between 1969–70 shows that genetic admissions accounted for about 11 per cent. of cases. Genetic diseases are now a major cause of death in those under the age of 15. As I shall describe later, the position is even more stark in the developing world.
There are questions; for example, about the legitimacy of screening for defective genes, about who should be told of what has been discovered and the implications of such knowledge for insurance policies and the health service, about whether a person who has a defective gene, which will bring about a debilitating illness in 30 years' time, should be told about it now, and about how far we should go in manipulation if, for example, it eventually becomes possible to ensure particular characteristics in our offspring like greater intelligence. The questions are many, complex and serious, and I do not intend to deal with them here. Instead, I want to point to the method which has evolved for dealing with such questions and to affirm that they can be dealt with in a responsible manner. Writing of an Anglican report prepared in 1958, but in words which have a much wider significance, the most reverend Primate the Archbishop of York has written:It was the first report really to exploit the method of detailed empirical study, allied with inter-disciplinary discussion, in such a way that theological insights were allowed to illuminate and articulate the moral claim inherent in the subject under study, without dictating prior conclusions. A notable series of similar reports, many of them on medical topics, have followed the same method".That was the method followed most recently in your Lordship's House by the Select Committee on Medical Ethics when it dealt with the questions around euthanasia. It is undoubtedly the method that is going to he followed for the next three decades as we grapple 1606 with a whole range of fresh questions. It involves, as that quotation said, detailed empirical study and inter-disciplinary discussion.
Furthermore, there is a moral claim inherent in the subject under study and if theology is brought in at all it will be to illuminate and articulate that, not to dictate prior conclusions. The assumption is that we do have the capacity and the sense as human beings to make moral judgments in those difficult, evolving areas. It is an assumption underpinned by a long tradition of Christian thinking that all of us, as human beings, whatever our religious beliefs or lack of them, have a moral awareness. It is indeed true that there are dire warnings from the Nazi attitude to eugenics, with their hope that they could breed a new race of supermen, eliminating the weak and the feeble. It is also true that we can frighten ourselves with the thought that, like Frankenstein, we can make monsters. It is good to have those fears, to keep them around and to build in safeguards to ensure that they are not realised. But it is part of our dignity and responsibility as human beings not only to intervene in the processes of nature for the well-being of humanity but to wrestle with the moral dilemmas that that throws up. An awesome task this may be, but then it is an awesome thing to be a human being.
The report of the Committee on the Ethics of Gene Therapy published in 1992 is a good example both of encouragement to continuing research and awareness of the need for limits and safeguards. We have already had our attention drawn in today's debate to a whole range of committees and regulatory bodies which exist to ensure that those limits and safeguards are observed.
More than 200 years ago, the Frenchman Diderot foresaw, as he put it:A warm room with the floor covered with little pots, on each of these pots a label: soldiers, magistrates, philosophers, poets, potted courtesans, potted kings".It is a picture which Aldous Huxley made familiar to the modem mind and which some now predict will become a reality. Do we really want to go down that road? Here two other factors come in to balance the earlier emphasis upon our vocation to intervene in, and manipulate, the processes of nature. The first is the traditional wisdom enshrined in the continuum of a loving relationship, sexual intimacy, the birth of a child and parenting. The majority of us came into being and find our identity through two people we knew —or, continue to know—who cared for us, who cared for one another and who expressed that love physically. As we know all too painfully, the quality of some of the ingredients in that nexus may leave a great deal to be desired. Nevertheless, in that continuum, that nexus, that holding together of love, sexual expression, gestation and parenting, there is a tried and tested experience against which any new developments have to be measured.
Then there is the wisdom, if we may put: it that way, in nature itself, all that the modem ecological movement has revealed about the delicate series of balances and relationships built up in any eco system. Drastically to interfere in one part without sensitivity as to what is happening elsewhere can have dire effects, as we have 1607 discovered with the indiscriminate use of powerful pesticides and fertilisers. That is not an argument to outlaw their use; it is just a reminder that we are dealing with delicately balanced systems. If we intervene and manipulate, particularly in an area so foundational for all existence as genes, the ramifications and repercussions are likely to be far-reaching. Safeguards are certainly needed.
Finally, in considering the ethical dimension, we will not be able to ignore the economic and political questions. For research costs money and the exploitation of research brings money. That raises questions about the diseases on which research will be done and who will benefit from that research. The most common single gene defect to afflict northern Europeans—cystic fibrosis—has a frequency of about one in 2,500 births. Sickle-cell anaemia with a frequency of about one in 50 to one in 100 births—a frequency 50 times more—predominantly afflicts Africans. Each year about 100,000 infants are born in Africa with sickle-cell disease. Similarly, thalassaemia afflicts people in the East and in the Mediterranean with a frequency as high as one in 50 to one in 100 births. In Thailand alone, more that half a million children out of a total population of 50 million suffer variable degrees of chronic ill health due to the interaction of the different thalassaemia genes.
According to an estimate made in 1983 by the World Health Organisation 242 million people around the world carried a copy of the gene for thalassaemia or sickle-cell. In the past the prevalence of these diseases was covered up by death from malaria. But as malaria has gradually decreased, these other genetically-based diseases, which have developed, ironically and tragically, as a response to malaria, have been uncovered.
When Sir James Watson set up the human genome project he expressed the hope that the benefits of the research would be for all the people of the world and not just particular nations. That must surely be our hope for all work in genetics. But this poses political and economic questions which are at least as pressing as the ethical ones about how we actually make the fruits of research available to those most in need of it and least able to pay for it.
So I would like to stress the first phrase of the noble Lord's Motion—the potential benefits of genetic manipulation—and to say that we should have the confidence to pursue this together with the confidence that the appropriate ethical committees, particularly from within the scientific community itself, can set up the necessary codes of practice and safeguards. I do not wish this to seem complacent or to appear unaware of the dangers of what Tom Wilkie has called,Sliding unawares into sin while trying to do good".But, equally, it does not help continually to carp on our incapacity to set up appropriate procedures. There are and will continue to be new ethical dilemmas as research unfolds over the next decades and centuries which will need to be faced afresh at each stage. Yet no less pressing will be the political and economic 1608 questions about how we make the benefits of this research available to those countries and people who need it most.
§ 6.2 p.m.
§ Viscount Massereene and Ferrard
My Lords, I do not intend today to dwell on the moral, religious, or ethical implications that will be raised in today's debate. There are many of your Lordships in the House today who are far better qualified than I to guide us. I would like to speak on the practical aspects of the subject. From the moment the first cave-man with a broken leg was dragged back to the cave and his leg put in a crude splint, the balance of nature was upset by human ingenuity.
Since then, the medical profession has, with intermittent success, succeeded in saving millions of human beings who would otherwise have died before passing on their genes. These efforts did not have any significant effect on our make up until the 1840s when the first successful caesarean section was performed which allowed both mother and child to survive. Since then many hundreds of thousands of caesareans have been performed thereby allowing children with big heads and women with narrow hips to survive. It is now only a matter of time—perhaps another 50 generations —before no child in the western world will be able to be born naturally owing to the laws of natural selection having been thwarted. I merely give this example to your Lordships to show how the medical profession, while seeking to do good at the time, does not necessarily realise the long-term implication of its actions.
There have been in the past several programmes to breed human beings selectively in a controlled environment. For example, on the island of Barbuda in the West Indies, the Blennerhasset family from the mid-seventeenth century until the 1830s when slavery was abolished, bred their slaves selectively to be not only big, strong and healthy but also to be of a sunny disposition. Once the blood lines had been firmly established—which incidentally apparently took around five generations—there were, so we are told, hardly any failures.
Peter the Great of Russia and Frederick the Great of Germany bred regiments of six foot 8 inch tall guardsmen with snub noses. More recently in Germany the National Socialists also instigated a breeding programme to produce so-called perfect specimens to be servants of the state. As we all know, that programme was brought mercifully to a halt at considerable cost to an entire generation. I have given these examples to show that one person's or group of persons' idea of what is desirable in a human being is not necessarily the idea of the rest of us.
The human gene pool has evolved over a period of some one million years to produce what by anybody's standards is an extremely successful species. We cover every nook and cranny of the earth's surface that is inhabitable and are flourishing as never before. In fact we are so successful that strenuous efforts have to be made to limit our numbers by various means of birth control. Scientists might think that by removing or 1609 altering various of our genes, they will be creating a better human being. I feel this approach is fantastically dangerous as by meddling with the human gene pool potentially fatal mistakes could be made which could virtually wipe out the entire species in a few generations. The black death could be made to look like a mild case of the sniffles.
Let us consider for a moment the utterly repugnant idea of a child being born, having a mother who was aborted and never existed—a concept one would have thought beyond the wildest ravings of the maddest of scientists. A child produced in this way would at the very least have deep-rooted psychological problems. Would it not be more practical for society to make a more concerted effort to match up all the unwanted children who already exist with the couples who desperately want a child to love and bring up as their own? Even the least promising of children could have in their genetic make up the seeds of a genius.
With any species, the wider the diversity of the gene pool, the more successful that species will be. Any tampering could for a short time perhaps produce a superior disease-free human being, but nature would almost certainly have her revenge in an unexpected and probably devastating way. To tamper with natural selection and our genetic make up is indeed sowing the seeds of our own self-destruction more efficiently and certainly than any nuclear holocaust could ever do.
§ Baroness Trumpington
My Lords, excuse me but this is a timed debate. The noble Lord has another chance to speak at the end of the debate so I think that we should proceed.
§ 6.8 p.m.
§ Lord Lester of Herne Hill
My Lords, the noble Lord, Lord Kennet, deserves gratitude for this timely debate on a matter of great public concern and for the moderate terms in which he has expressed his views. He could have used the kind of emotive language one sometimes hears which is more like that of science or honor fiction, and we must all be grateful that no one would use that language in this debate.
I would like to speak but I have almost no qualifications for saying anything. I am not a moral or spiritual leader; I am not a scientist; I am not a philosopher; I am a lawyer and I am a man. Being a man, I think, disqualifies me more as regards some of these issues than others. Being a lawyer I will be severely practical. I would like to speak only on the second issue raised by the Motion—that of assisted procreation. I want to focus upon the way in which this House and the other place might approach issues of this kind. The potential risks and the benefits of assisted procreation are matters which occupied a great deal of time in this House four years ago during the passage of the Human Fertilisation and Embryology Act. That 1990 Act set up the Human Fertilisation and 1610 Embryology Authority to regulate precisely this area of research and medical practice. The noble Baroness, Lady Hooper, said at Second Reading that the Secretary of State would take all the necessary steps to ensure that the authority contained a wide and balanced set of views and expertise, which would include ethics, and that it would be worthy of full public confidence.
The membership and the remit of that authority were discussed in detail both here and in another place during the passage of that Bill. The authority took up its powers in 1991 and has shown itself to be worthy of full public confidence in the way it carries out the task given to it by Parliament.
The authority was set up to regulate embryo research and fertility clinics after many years' consideration and debate on the very kind of issues which rightly concern the noble Lord, Lord Kennet, and other noble Lords. It was set up because Parliament recognised that new methods of assisted conception affect family life and that it is important that legal, social, ethical and moral implications are carefully considered to protect the society that we live in.
The benefits of overcoming fertility problems and, in some cases, life-threatening heritable disorders can be readily perceived. The threat to individuals and to society at large are exactly what the authority is well placed to identify and deal with.
Who are the members of the authority? Parliament provided that the chairman, deputy chairman and a majority of members of the authority should be lay people—not doctors or scientists involved in research or treatment. Great care has been taken in making appointments to the authority. I would hope that its membership will satisfy the noble Lord, Lord Kennet. Members are drawn from a wide cross-section of society and include people with expertise in ethics. Some members have backgrounds in religion, nursing and legal philosophy, but I am sure that the authority does not pretend to have a monopoly of wisdom in this area. For that reason it regularly and quite properly seeks the views of the wider public when issues of particular social and ethical importance arise.
One of the authority's main tasks is to keep itself informed of possible new developments and to address the ethical and social issues before licensing any new research or any new treatment procedure. Nothing now can be licensed in this country which the authority does not consider to be necessary or desirable for the statutory purposes in the 1990 Act.
The authority regulates and sets standards for clinics. It licences only those which meet the standards. Licences have been withheld while clinics deal with concerns raised by the authority's inspectors, and research and treatment licences have been refused where necessary. The authority grants a research licence only if satisfied that the use of human embryos is essential and the research project is necessary and desirable. That, I suggest, is an essential power, and it is essential that it is exercised wisely—as it is.
The authority has faced a number of difficult issues since taking up its powers in 1991 and has responded to 1611 them in a clear-sighted and balanced way. I hope that noble Lords will allow me to give one or two examples to show exactly how the authority has been working.
Last year the authority consulted nationally and said no to the sex selection of sperm or embryos in licensed treatment for purely social reasons. That consultation took place amid considerable and justifiable press attention. The authority concluded that sex selection of embryos by pre-implantation diagnosis should be permitted where there is risk of the mother producing a (usually male) child with an inherited life-threatening disease. It is permitted for no other reason whatever.
The authority also last year considered cloning by embryo splitting, or artificially creating identical twins. It said no to cloning. It reached that decision in March last year, long before the case of the American researchers hit the newspapers in October. In the case of sex selection and of cloning the authority was ahead on the issues because it had received information from the field before it became common knowledge.
Similarly, on the issue raised by the Motion, the use of donated ovarian tissue, the authority had advance notice from scientists and clinicians of the possibility of including the use of foetal eggs. The authority started considering that issue as long ago as 1992, well before the flurry of media attention last Christmas. It had the opportunity to give the matter mature and considered study and saw the need to consult widely on the important issues raised. It brought the matter into the public domain in a way which identifies the issues and gives people a chance to think about them carefully.
The consultation document is a balanced and lucid document, published by the authority, addressing issues about the use of tissue from three sources: live donors, cadavers and aborted foetuses. The serious press greeted the document with acclaim and many leading articles have been devoted to discussing the issues raised. The use of foetal tissue has attracted the most media attention and the attention of some Members of another place. As the noble Lord, Lord Craigavon, said a few moments ago, the document was a model of its kind.
This is a complex area in which the public have shown enormous interest. I understand that more than 20,000 copies of the document have been sent out and that several thousand responses have been received so far. Very many respondents have said how much they appreciate having the opportunity to comment on such important issues before decisions are made. So great has been the public response that the consultation period has been extended until mid-July.
Noble Lords may therefore consider that it is unfortunate that the Criminal Justice and Public Order Bill has been amended in another place to ban the use of foetal tissue in fertility treatment right in the middle of the authority's public consultation. The amendment does not address all the issues raised by the HFEA document. It simply seeks to pre-empt the consultation in one area. It would be a great pity if the opportunity for more considered and rational debate on this issue were thus to be curtailed. After all, the HFEA was set up by Parliament to control and regulate this area. As I have 1612 explained, it has full powers to do so. Hasty legislation is rarely as coherent as legislation which is the result of long and well considered debate.
It may be considered significant that Parliament considered the issues surrounding embryo research and assisted conception over an extremely long period before setting up the authority. The committee of the noble Baroness, Lady Warnock, reported in 1984, and the legislation was only completed in 1990. Noble Lords may think that the consultation may safely be left to run its course. The authority could then provide the Government with the full advice that they need, including recommendations about further legislation if such legislation should be thought necessary. I hope that that is a matter which can be further considered when the Criminal Justice and Public Order Bill is discussed in this House in Committee.
I am grateful to the noble Lord, Lord Kennet, for this opportunity to discuss some of the issues which go to the root of the human condition. The benefits offered and the potential threats of assisted procreation are well understood and controlled in this country by the authority. The authority has shown itself to be a responsible body doing a good and difficult job. It reports to Parliament every year. The Government approve its codes of practice and appoint its members. But it is an independent statutory body, set up deliberately at arm's length from Ministers to deal with difficult and controversial matters. It is the object of some attention and awe abroad because it is the only body of its kind dealing both with the practical aspects of licensing this area of medicine and science and also with the ethics and policy on which licensing is based.
I very much hope therefore that the authority will be permitted by Government and by Parliament to complete this important consultative exercise before legislative powers are used in this complex area. I suggest that both Government and Parliament need the benefit of the authority's wise and full advice. Meanwhile, there really is no need for Parliament to rush in. I would hope that the noble Baroness, Lady Cumberlege—if I may say so, a voice of moderation and reason—would agree that the authority should complete its work before being eclipsed by hasty action.
§ 6.20 p.m.
§ Lord Rea
My Lords, I felt that a medical voice should be heard in the debate. Perhaps in my case it will be a rather utilitarian voice. I had hoped that my noble friend Lord Walton of Detchant would take part because he is an international authority on Duchenne muscular dystrophy, one of the inherited genetic disorders which would be covered by the territory discussed in the Motion. With his own research he has contributed considerably to knowledge of the nature of that condition. He is also a past president of the General Medical Council. That would have given him a strong position from which to speak on ethical issues. However, I think that he should be honourably excused following his presentation of the report of the Select Committee on Medical Ethics on Monday, not to mention the long hours spent in chairing the committee. 1613 I am no geneticist but in a lifetime of medical practice I have met many of the disorders which might be helped quite soon by gene therapy through the application of genetic manipulation if current promising research is allowed to continue. Some of those conditions, all caused by a single defective gene, may be known to your Lordships. Three have been mentioned already by the right reverend Prelate the Bishop of Oxford: muscular dystrophy; sickle-cell anaemia; and thalassaemia. Others include haemophilia and a condition which causes premature heart disease, familial hypercholesterolaemia. Those are all conditions which lead to a shortening of life. Although expensive treatment has improved life so that people live a little longer, the life span is still much shorter than it should be.
Further ahead there are possibilities of helping inherited conditions of polygenic origin due to multiple genetic defects making certain individuals more prone to environmental influences. Conditions include heart disease and diabetes. There are many other examples. Of great interest is the possibility of using genes which prevent the multiplication of cancer cells. Ways of getting those genes to cancer cells are being actively developed, some using viruses which have been disabled from causing disease.
However, as many noble Lords have said, there are justifiable worries about any procedures which affect such fundamental processes of the human body. As the right reverend Prelate pointed out, the first worry is that some mad, over-zealous or bad scientist will create a Frankenstein accidentally or on purpose. There is an underlying disquiet that perhaps man is meddling with something that should be untouchable; that we should accept our heritage as God given and not try to improve on his handwork; and that retribution might come in the form of incurable diseases or a race of psychopaths. I was delighted to hear from the right reverend Prelate that he does not share that view and feels that it is a proper concern for human beings to inquire into their make-up if that can improve their lot.
Much of the disquiet is due to lack of knowledge of what is or is not possible by true genetic manipulation. It is highly unlikely that any current research would have an adverse effect, but it was in response to understandable underlying concerns that the Clothier Committee on the Ethics of Gene Therapy was set up in 1989. That committee reported in 1992. The report is extremely thoughtful. Sir Cecil's introduction sets the tone. I should remind noble Lords that Sir Cecil Clothier was for some time the parliamentary commissioner for the health service, the ombudsman. In the introduction he states:Every significant development in science or technology has been accompanied by dangers both known and unknown. Society watches this progress with mingled admiration and anxiety, the more acute perhaps as science gets ever closer to the fundamental controls over the nature and composition of living things. To prohibit the progress of science in any particular direction may well be tyranny; to seek to shape its course is surely sensible. In doing so we should be careful also to preserve the right of society to determine how the achievements of science are used".The main recommendation of the report was the setting up of a permanent body to succeed the committee. That is the Gene Therapy Advisory 1614 committee which consists of lay and scientific members chaired by Professor June Lloyd, an eminent paediatrician. The responsibilities of that committee are set out in the Clothier Report and are quite comprehensive. They are described under 10 headings and five sub-headings. Those include advice on the design and control of the research; long-term surveillance of treated patients; potential benefits and risks of any research on treated individuals—that almost follows the title of the Motion—and the ethical acceptability of any proposal. As recommended, that permanent committee was duly set up and had its first meeting last November. I believe that that was a proper response by the Government to the Clothier Report.
Among several other recommendations in the Clothier Report—it was referred to by my noble friend Lord Kennet—was that germ line gene therapy should not yet be attempted. The purpose of that form of therapy would be to prevent the transmission of defective genes to subsequent generations—a laudable aim, I feel. However, the committee felt that there is not at present sufficient knowledge to evaluate the risks to future generations. I believe that my noble friend's rather gloomy view of some of the results of that research was directed to what would happen if germ line gene therapy were to be allowed to continue. We do not know whether it will be allowed to continue. At present it is felt unwise to go down that road. But as knowledge progresses that decision might be reviewed. The prohibition on that type of research is similar to the decision of the Human Fertilisation and Embryology Authority to prohibit experiments on human pre-embryos after 15 days from conception. Again, as knowledge advances that decision might well be reviewed.
The authority was well described by the noble Lord, Lord Lester. That reference brings me to the main point I wish to make. I consider that both scientists and the Government have acted responsibly and correctly in the United Kingdom and that we have now achieved an adequate, almost a model, system of supervision for both human genetic manipulation and therapy and assisted conception. Since 1984, as well as the two bodies I mentioned we have had the Advisory Committee on Genetic Modification which is particularly concerned with the safety of those working in the field of genetic modification, The committee reports to the Health and Safety Executive and also advises Ministers and comments on new developments in genetics and genetic manipulation which may be of interest to Ministers.
I believe that the country has got it about right. The issues are highly complex and such advisory committees and authorities, composed of concerned scientists and ethically expert lay members, including members of the Church and the legal profession, should be the first to consider the difficult issues as they arise and then present their considered view to Parliament. I do not believe that any other country has such a well-balanced system. Perhaps the noble Baroness will comment on what other countries have done. I know 1615 that the European Commission and WHO are concerned with the area, but I do not know whether their reports have resulted in any action.
In the case of the amendments to the Criminal Justice Bill, the noble Lord, Lord Lester, referred to them and described them at some length. The Bill is now awaiting the Committee stage in the House. I thoroughly agree with the noble Lord that the process of consultation with the body we have set up to deal with such complex issues was undermined at the very time when Professor Campbell's team was considering the controversial issue. It was taking enormous care to obtain soundings of expert lay and popular opinion throughout the country, as the noble Lord, Lord Lester, and the noble Viscount, Lord Craigavon, pointed out so clearly. The issue was peremptorily decided in another place with, I am afraid, government backing or at least acquiescence before the House had had the benefit of the considered opinion of the expert body. It was set up to consider exactly such issues. I hope very much that the House will think again on the issue at the Committee stage of the Bill and perhaps reverse it.
Finally, although I have praised the Government for setting up the control and advisory system for genetic manipulation, fertilisation and embryology, I must mention in contrast—and this is the only party political point I shall make—a sadly adverse effect of the Government's clumsy handling of London's hospitals and medical schools, especially the famous postgraduate medical school at Hammersmith. Because of uncertainty about the future of that institution, Professor Kay Davies, the extremely able geneticist, who is director of the Medical Research Council's clinical science centre at Hammersmith, has resigned her post. We in this country are lucky that she has been offered another base for her work in the United Kingdom. Too many able scientists and clinicians are reluctantly leaving the country because of present uncertainty and poor funding for their research.
§ 6.32 p.m.
§ The Earl of Macclesfield
My Lords, I too wish to add my congratulations to the noble Lord, Lord Kennet, on giving the subject an airing today. I wish to say a few words first on assisted procreation, obviously in the hormonal and laboratory sense. I believe that it is quite simple: no one person, male, female or hermaphrodite —depending on the species—has any right to join in the creation of the next generation. Indeed, no species has the right to exist. If that right exists, what has homosapiens been doing recently riding roughshod over all those rights? I feel that mankind is better off accepting the lot in life that we have been given. It gives us the rich pageantry that we have, without which as a species we would be a lot weaker.
Very similar remarks apply to genetic manipulation. I entirely agree with the wise words of the noble Viscount, Lord Massereene and Ferrard. We are on a slippery slope if we start interfering with the powers of the creator—whoever or whatever that force may be. We are aiming at a slippery slope if we interfere with those powers. We do not begin to understand the 1616 strength of those powers, their ways or why we have a gene pool or lethal recessives. Yes, to certain families they are a complete tragedy. As I understand genetic manipulation, it will become possible, virtually at a stroke, to remove a problem like Huntington's chorea. It is wonderful for that family but, in the overall scheme of things, is it the right course of action? The noble Lord, Lord Kennet, mentioned closing the door before the foal is born. I wonder whether noble Lords have thought how fast a young animal gets up and runs?
§ 6.35 p.m.
§ Baroness Jay of Paddington
My Lords, I wish to thank my noble friend Lord Kennet for introducing the subject this evening. When I saw the Motion on the Order Paper I was reminded of your Lordships' discussion before the Easter Recess on whether or not it was appropriate to debate major issues in short debates. However, what we have seen this evening is that it is worth while tackling these enormous subjects because at least every noble Lord who speaks has an interesting and diverse viewpoint, even if there is some difficulty for those of us speaking at the end of the debate in finding a straight line through all the contributions.
Perhaps I may say at the outset that if I had been my noble friend I might have put the "benefits" of the subjects under discussion (of genetic manipulation and assisted procreation) before the "threats".
I should mention that, like the noble Viscount, Lord Craigavon, I have for some time been privileged to be a patron of the Progress campaign; that is, the Campaign for Research into Human Reproduction. But, unlike other noble Lords who have spoken, I too am a lay person. I am, however, the first woman to speak in the debate. The Minister will be the second. As the noble Lord, Lord Lester of Herne Hill, mentioned, that is an important and valuable piece of special pleading in this particular context.
It is worth stating again what a widespread problem infertility is in this country. One in six couples seeks medical help in order to have a child. One in 10 is officially categorised infertile. "Infertility" sounds a cool and almost neutral word, and I think for those of us who, like myself, were lucky enough to have healthy children easily and happily it is easy to ignore the profound psychological and emotional strain which that word and those figures represent.
In the course of being involved in the Progress campaign, as a member of a health authority and also earlier when I was working as a journalist, I have been to a number of infertility clinics. I have seen the extraordinary work done, for example, at the Hammersmith Hospital by Professor Robert Winston who has been a world leader in the field of developing in vitro fertilization—the so-called test tube baby technique. I have seen what enormous benefits that has produced. I have seen the dogged persistence of couples —of women in particular—who are prepared to go through the very invasive procedures, which are both physically and emotionally demanding, in order to achieve a child. One should not forget, when one 1617 considers the potential threats of the procedure, the enormous benefits in human happiness that IVF has already brought.
It is also easy to forget how recently in vitro fertilisation has developed. I was thinking today of Louise Brown who was the first so-called test tube baby. She was born through the extraordinary pioneering work of Dr. Steptoe and Dr. Edwards in Cambridge and she is now just 16 years old. It was an enormous achievement by those British doctors in the late 1970s.
When I first began to look into this subject, in the early 1980s, I visited the Monash University in Australia where they were carrying out some of the original pioneering work on freezing pre-embryos, and on the more elaborate and sophisticated IVF work. There was an extraordinary sense of excitement both in terms of the scientific breakthroughs which were going on and also for the individuals who came to the clinics, prepared to discuss the ethical difficulties that they would face but prepared to accept them because of the optimistic practical prospects which lay before them.
But of course IVF - test tube procedures—is still a very difficult technique. It is still true that approximately only 14 per cent. of women who begin IVF treatment conceive and finally give birth. The so-called, rather frivolously termed "take home baby" rate is still very low.
However, while the technique has been going on—and, as I said, it is only in the past 16 years that we have been able to look at anything in the way of therapeutic treatment in this area—we have allowed, gradually over time, a public acceptance to grow up. The nature of the demand, which grows, is seen in the fact that there is enormous pressure on NHS resources in this field. Unfortunately, still only 10 per cent. of assisted fertility births in this country are done through the NHS—a subject which we will not get into tonight; it is another area of economics rather than ethics.
That gradual development—the science going along with the practical, clinical benefits of the science—is even more true in the field of gene therapy. Professor Marcus Pembrey, who has been quoted already tonight, wrote recently that gene therapy was "tricky or very tricky". I say that because we have perhaps had the impression from some of the contributions from noble Lords that science is accelerating and galloping away from us. My feeling would be that, particularly in the fields of IVF treatment and gene therapy (the two subjects that I pick out in my contribution), science is developing rather slowly and is in a sense working at the same pace as public acceptance.
Professor Marcus Pembrey, whom I just quoted, works, as do so many of the people who are concerned with genetic therapy, with children. He works at the Institute of Child Health, which is attached to Great Ormond Street Hospital. That work is obviously designed, as several noble Lords have mentioned, to reduce the incidence of genetic disorder in babies. The figures have already been quoted, but I think it is worth going over some of them again. Each year in this country 21,000 infants are born with a significant degree of genetic disability. Half the childhood deaths are due 1618 to genetic disorders. At least 1.5 million families are directly affected by someone in their own immediate family having one of those genetic problems.
Noble Lords have spoken about some of the disorders which cause great suffering. Duchenne muscular dystrophy, in which most children who suffer from it will be in wheelchairs by the age of 11, has been mentioned. Several noble Lords have referred to the most common genetic disorder, cystic fibrosis. Every week that affects five children born in this country. Even today, those children will survive to young adulthood only with heart-lung transplants. Huntington's chorea is another genetic disorder which brings crippling disability in middle age. Reference has also been made to Tay Sachs disease; thalassaemia; sickle-cell disease. These are all disorders on which painstaking research has begun. As has already been mentioned, in some of them the one gene which creates the disorder has already been isolated. Professor Bob Williamson, working at St. Mary's Hospital, in London, has already done pioneering work in isolating the gene for cystic fibrosis. With in vitro fertilisation techniques, parents can now be offered—I find this so exciting as to be almost overwhelming—what is called "pre-implantation selection" of embryos which do not have the gene that will cause the child to be born with cystic fibrosis. Only the embryos which are not at risk from disease are transferred back to the mother. That therapy is very new. The first baby born following the pre-implantation diagnosis for cystic fibrosis was born in May 1992.
It is worth describing those changes because they are bringing us to the verge of really extraordinary changes in the development of our approach to those genetic diseases. The question tonight has been: are we in this country acting sufficiently responsibly and in a sufficiently interventionist way to make sure that those forms of therapy and experimentation provide more benefits than threats?
Of course we have all heard and read a great deal about charlatans; about so-called designer babies; about the ability to choose the sex; about the potential ability to choose whether or not a child has musical ability, and so on. But those are still great fantasies. What we are talking about today are those practical things which, as I said, assist the very large number of people in our country who have problems with infertility and the very large numbers who experience terrible suffering as a result of inherited disease.
I echo the remarks of the noble Lord, Lord Lester of Herne Hill, and my noble friend Lord Rea about the very successful way in which we have succeeded in this country in developing appropriate systems for monitoring what is happening in the scientific field. I was surprised that my noble friend Lord Kennet, when he spoke about the moral/ethical gap in our proceedings on this matter, seemed to ignore the work of the noble Baroness, Lady Warnock, which was referred to later in the debate. As we know, the noble Baroness is one of our most distinguished moral philosophers and was very much involved in the original thinking on this subject. The noble Baroness chaired the important committee in the early 1980s which led, as the noble Lord, Lord 1619 Lester of Herne Hill, said, directly to the voluntary licensing agency, which was the precursor of the Human Fertilisation and Embryology Authority. As the noble Lords have said, that authority is now a model for the world. Because the noble Lord, Lord Lester of Herne Hill, described it in such very clear detail, I do not need now to expand on the wise mixture of scientists and lay people who make up the authority and do such an excellent job in this field. My noble friend Lord Rea also spoke in some detail about the various regulatory bodies which affect the gene therapy area. He spoke about the Committee on Ethics of Gene Therapy; the Gene Therapy Advisory Committee—known by the wonderful acronym of GTAC—which was set up last autumn by the Department of Health. There are also the specialist oversight teams of the Medical Research Council. Noble Lords have also referred to the Nuffield Council on Medical Ethics. When I spoke to people there about the debate today they felt that perhaps one gap in our regulatory system was a central co-ordinating body looking at clinical trials, co-ordinating what is going on in terms of patients and laboratory experiment in this field. This could be an extension of the regulatory bodies which now exist and a very helpful addition.
I should also like to say that scientists themselves have been energetically involved in making the public aware of what they are doing in this field. There are the genuine fears and concerns which various noble Lords have expressed this evening about whether research will run ahead of the consideration of social and ethical issues in this area. But I feel that if the scientists—such as Professor Bob Williamson, Professor Marcus Pembrey, whom I referred to, and Professor Martin Bobrow of the paediatrics research unit at Guy's Hospital—all take the trouble, as they have done, to write in colloquial, straightforward English (English which can be understood even by someone like myself) about the work that they are doing and the benefits that it brings, the scientific community is very usefully reaching out to the general lay public in a way that is particularly helpful in this field.
Several noble Lords have referred to the rather unfortunate situation that has arisen over new Clause 138 in the Criminal Justice Bill. I do not think that it is appropriate this evening to go into that in any detail. I shall say only that I support very strongly what was said by the noble Lord, Lord Lester of Herne Hill, and my noble friend Lord Rea. I hope that we shall have adequate time to return to that matter when the Bill reaches Committee stage in this House.
In conclusion, this is an area both in medicine and in social organisation where the United Kingdom has much of which to be proud. In the past 20 years we have led the world in basic research. We have rapidly transferred that research from the laboratory to patient services. At the same time we have developed regulatory systems which enable the public to be confident that science in this country is not running ahead of ethics. That is a success story. We should congratulate ourselves that the benefits outstrip any threats.
§ 6.50 p.m.
§ Baroness Cumberlege
My Lords, I am grateful to the noble Lord, Lord Kennet, for giving your Lordships' House the opportunity to debate these challenging issues. The noble Lord's interest in scientific matters is well known both within and beyond this House and his contributions to our discussions are invariably thoughtful, well researched and much valued, and today has been no exception.
As the noble Lord, Lord Kennet, made clear in his opening speech to this debate, over the years considerable progress has been made in human genetic research and in the field of assisted conception. Through gene therapy we are now closer than ever before to curing many frightening and devastating disorders and are able to help couples fulfil their dream of having a family. Through public debate both within the Palace of Westminster and in the country at large the Government have been encouraged to regulate and monitor developments in gene therapy, assisted human fertilisation and embryology. This debate in your Lordships' House is welcomed because it takes us forward in examining not only the benefits, but also the difficult ethical issues which those developments raise.
The national debate started in earnest when, in 1989, the Government raised the prospect of gene therapy being introduced into medical practice and addressed the public anxiety which such developments might evoke—anxieties so lucidly and graphically expressed by my noble friend Lord Massereene and Ferrard and the noble Earl, Lord Macclesfield. As a result, the Government established the Ethics of Gene Therapy Committee under the chairmanship of Sir Cecil Clothier. The committee's report, a comprehensive review of the subject, was presented to Parliament in 1992 and I share the admiration of the noble Lord, Lord Rea, for the committee, and am grateful for it and its report. It sets the framework within which gene therapy research is being developed. Last year the Government announced that they had agreed in principle to the main recommendations in the report. As a result the Gene Therapy Advisory Committee was established under the chairmanship of Professor Dame June Lloyd, to take forward the work of the Clothier committee.
This new committee brings together a wide range of expertise through its medical, scientific, legal, ethical and lay membership. One of its key tasks is to review all proposals for gene therapy research on human subjects advising on ethical acceptability. That requires a careful assessment of the scientific merits of the proposals and the potential benefits and risks which arise from them. So far the committee has met three times and approved eight research proposals, three of which have cancer as their main target disease—a practical application which I am sure meets the approval of the noble Lord, Lord Rea. The committee has already started to gain a reputation for the sensitivity and quality of its advice and guidance. The Government are grateful to the chairman and members for the responsible way in which they carry out their task. It is an independent body which 1621 works closely with the Medicines Control Agency. We will keep the need for further statutory controls under constant surveillance.
As the noble Lord, Lord Kennet, in his perceptive speech forewarned, some future developments may totally alter relationships and could even achieve "species revision". It is for those reasons that the committee was set up. The committee recommended that genetic modification of the germ line which could affect future generations should not yet be attempted. The Government accepted that recommendation. Whether or not germ line therapy should be permitted in the future is a matter on which the Government look to the Gene Therapy Advisory Committee for advice. No approach has yet been made to the advisory committee to consider statutory intervention. It could well be one of those areas for debate which the noble Lord described as,ethical realities and political puzzles".One of the bodies facing these issues was highlighted by the noble Viscount, Lord Craigavon; that is, the Nuffield Council on Bioethics. That body is tackling some of the issues which were challengingly raised by the right reverend Prelate the Bishop of Oxford and, like the right reverend Prelate, it addresses the ethical issues which genetic screening presents. As he said, it may have implications for kindred, including children and those unborn. The right reverend Prelate also questioned the capacity of the NHS to respond to developments in screening and I hope.that he will be a little reassured by the fact that we established the NHS Genetic Research Advisory Group to consider, among other things, the implications of current research on screening for disorders such as cystic fibrosis and for more common conditions such as breast cancer and cardiovascular disease. Its report is due to be published this summer.
The system of monitoring which the Government put in place is designed to provide a rigorous review of all proposals which involve patients, especially when a judgment on the ethical and scientific validity of the work is needed. That, we believe, will allow the development of medical research to proceed in a climate of public, parliamentary and professional reassurance.
The noble Lord, Lord Kennet, raised the issue of genetic screening and the insurance industry. The Nuffield report also raised that issue. Informed by that report, the Government will monitor developments closely. At this time the Association of British Insurers have reassured us that it is not likely to ask for genetic tests to become a condition of life insurance. However, it maintains that it is only reasonable that, where such tests have taken place, any information held by the patient should be made available. That will also be the case with any other form of medical information a patient holds.
The noble Lord also raised anxiety about the misuse of genetic information. It is important that the same ethical principles are observed in safeguarding the confidentiality of genetic information as are applied to other personal health information. Such knowledge could have an enormous impact on families who may be faced with difficult decisions concerning their own lifestyles. I should like to pay tribute to the genetic 1622 counsellors and the voluntary organisations for their work in this difficult area. But of course whether or not screening is undertaken by an individual, is for that individual to decide after adequate counselling.
Many of your Lordships will remember the long and careful consideration that this House gave to the provisions in the Human Fertilisation and Embryology Bill before it was sent to another place. Our deliberations on that occasion were significantly informed by the Government's White Paper, Human Fertilisation and Embryology: A Framework for Legislation, and by the earlier report of the Committee of Inquiry into Human Fertilisation and Embryology which was chaired by the distinguished and noble Baroness, Lady Warnock. That Bill became the 1990 Human Fertilisation and Embryology Act, an impressive and comprehensive piece of legislation. As a result, the United Kingdom is a world leader in the way human embryo research and the treatment of infertility is regulated.
Under the 1990 Act we established the Human Fertilisation and Embryology Authority which, as the noble Viscount, Lord Craigavon, in his interesting speech, said is the first of its kind in the world. I am also grateful to the noble Lord, Lord Lester of Herne Hill, for his detailed exposition and, I suspect, admiration for the authority. As the noble Lord said, it licenses centres which provide certain infertility treatments and others which carry out embryology research. Due to that and other initiatives, we have an effective system of regulation and control. The authority, under the chairmanship of Professor Sir Colin Campbell, built up a wealth of expertise and experience and gained the respect of the medical and scientific community. Also, it has been an important source of reassurance to the public, providing careful scrutiny and ensuring developments are not allowed to progress without public knowledge.
Perhaps I may take this opportunity to congratulate the noble Baroness, Lady Jay, on what. I felt was a perceptive, knowledgable and powerful speech. Like the noble Baroness, the Government recognise that infertility can cause sorrow and great sadness; but developments in IVF have brought hope and, where successful, great joy to many couples. Although we celebrate and share those achievements, the welfare of any child who may be born as a result of assisted conception is and always must be a major consideration. That is a fundamental principle of the 1990 Human Fertilisation and Embryology Act which states that,A woman shall not be provided with treatment services unless account has been taken of the welfare of any child who may be born as a result of the treatment (including the need of that child for a father), and of any other child who may be affected by the birth".That is a legal condition of the grant of a licence and an important part of the Human Fertilisation and Embryology Authority's code of practice which gives guidance concerning the proper conduct of activities licensed under the Act. The maintenance and publication of a code of practice is a legal requirement. It is approved by the Secretary of State for Health and laid before Parliament. The authority published a 1623 revised code of practice in June last year and is currently preparing a further revision. The authority keeps this code under review in the light of developments.
The authority also has an important role in considering social and ethical issues in infertility treatment and embryo research. Last year it issued a consultation document, to which noble Lords referred, on sex selection, and sought views on whether sex selection for social as well as medical reasons should be permitted as part of assisted conception. As a result, the authority has advised centres which it licenses under the 1990 Act that sex selection for social reasons is not acceptable. Also, in January this year the authority decided that, although permitted under the 1990 Act, it would not license the use of cloning by splitting embryos for treatment purposes, or for research directed towards that.
For their part the Government ensure that the public is kept fully informed. The Human Fertilisation and Embryology Authority produces an annual report which has to be approved by the Secretary of State for Health and laid before both Houses. The more recently established Gene Therapy Advisory Committee will also publish an annual report.
Wide and well publicised consultation with public and professional bodies on difficult issues such as sex selection are regular features in the way these public bodies operate. In addition the membership of both the HFEA and GTAC has a strong lay representation which includes, for example, the Bishop of Edinburgh, Rabbi Julia Neuberger and Canon Dr. Denison. We agree with the noble Lord, Lord Kennet, that these issues require a membership of not just scientists but also those who are philosophers, moral and spiritual leaders, academics and, most important of all, lawyers, and also others from different walks of life.
The noble Viscount, Lord Craigavon, is so right. We need a wide debate and an informed public. I join the noble Baroness, Lady Jay, in paying tribute to the Progress Education Trust which provides an excellent example of how a simple guide to the complexities of modern genetics can be achieved. It is through organisations such as these and the means that I have outlined that the Government believe that both the scientific community and the public at large are properly served and that the interests of individual patients are protected.
I appreciate the disappointment of the noble Lord, Lord Lester of Herne Hill, the noble Viscount, Lord Craigavon, and the noble Lord, Lord Rea, that the consultation exercise carried out by the HFEA on the use of foetal eggs for fertility treatment has to some extent been seen to be somewhat pre-empted by the amendment to the Criminal Justice and Public Order Bill carried in another place. Like the noble Baroness, Lady Jay, I do not wish to pass comment on that except to say that it is a matter which will be before your Lordships' House in June when I am sure your Lordships will have a full and very well informed debate.
Tonight's debate has highlighted not only the scientific issues but the equally important moral and 1624 ethical decisions that have to be made when human individuals are involved in gene therapy, assisted conception and genetic research. It is in considering issues of this kind that your Lordships' House excels. Today has been no exception. It is clear from what has been said that we must be ever mindful of the essential balance between scientific development on the one hand, and ethical and moral values on the other. On that score, I believe that the scientific community in this country has a record second to none.
§ 7.3 p.m.
§ Lord Kennet
My Lords, I have only three points to make. First, I am particularly grateful to those noble Lords, including the noble Baroness the Minister, who have told the House so much about the existing structure of regulatory bodies, and so on, all of which I left out, as a calculated risk, because I thought I had a lot of other things to say. However, I need not have worried as obviously it was going to be put before the House.
Secondly, I was distressed that my noble friend Lady Jay thought that I might have forgotten about the noble Baroness, Lady Warnock. I had not. The point I was trying to make was not that philosophers were no good but that there were not enough philosophers in all the right places. As the chairman of the first committee in the modern age to tackle a bioethical hot potato, she is a great example of where philosophers ought to be. There are several real philosophers in this House, and the noble Baroness is one of them.
Lastly, I should like now to tell the noble Viscount, Lord Massereene and Ferrard, the story which the noble Baroness, Lady Trumpington, so correctly prevented me from telling earlier. The noble Viscount mentioned the Blennerhasset experiment on the island of Barbuda where they bred slaves very tall. I was sitting once in a bar on a neighbouring island and I found myself next to a black man of about 6ft. 10 ins. I decided to risk it. I said to him, "How are things in Barbuda?" His answer was, "How did you know ?" The answer deserves thinking about. I wonder how many people there are in the world who are themselves the results of eugenic experiments in an earlier age and do not know it. I beg leave to withdraw my Motion.
§ Motion for Papers, by leave, withdrawn.