§ 1.5 pm
§ The Secretary of State for Health (Dr. John Reid)
With permission, Mr. Speaker, I wish to make a statement about the White Paper on genetics and health care that we are publishing today. The paper, "Our Inheritance, Our Future—Realising the potential of genetics in the NHS", is available from the Vote Office.
Today's White Paper could not be published at a more appropriate time. This year marks the 50th anniversary of the publication by Francis Crick and James Watson of the structure of DNA. I begin by paying tribute to their work. DNA is the molecule of life from which our genes are made. The discovery of its double-helix structure set the stage for 50 years of world-changing genetic advances. It has allowed scientists to decode the human genome and to identify and sequence all the 30,000 or so genes that each of us carry in every cell of our body. This gigantic task was completed earlier this year. The UK has played a leading role in this ambitious international project, with a third of the genome being mapped at the Wellcome Trust Sanger Institute in Cambridge.
Increasing understanding of genetics will bring more accurate diagnosis; more personalised prediction of risk; new gene-based drugs and therapies; and better targeted prevention and treatment. In time we should be able to assess the risk that an individual has of developing the country's biggest killers—cancer and coronary heart disease—as well as diseases such as diabetes that limit people's lives. We will also learn more about how variations in our genes affect the way we respond to medicines. Further down the line, genetics will lead to the development of new therapies aimed not only at treating disease in novel ways but at preventing it.
Thus, genetics has the potential to bring immense benefits for patients. Above all, genetics promises a more personalised approach to health care with interventions tailored to each person's own genetic profile. This science, therefore, encourages us to develop the personalised NHS suitable for the 21st century that the Government are committed to creating. Our vision is for the NHS to lead the world in taking maximum advantage of the safe, effective and ethical application of the new genetic knowledge and technologies for all patients as soon as they become available. The vision calls for an integrated strategy that will support the generation of new knowledge and technologies, further develop centres of excellence in the NHS and facilitate the roll-out of genetics into all NHS services; and all within the context of a rigorous regulatory framework and greater public understanding and engagement. The White Paper sets out how that will be achieved.
I believe that no other health care system in the world is better placed to harness the potential of genetic advances than the national health service. The values on which the NHS is based—providing care for all free at the point of use on the basis of need, not the ability to pay—are uniquely suited to capturing the benefits of the genetics revolution. They provide a bulwark against the inequalities of private insurance-based health systems in which the prospect of a genetic super-class of the well and insurable and a genetic underclass of the unwell and uninsurable, unable to pay the premiums for medical care, is for many a very real threat.
877 Our NHS means that citizens in the UK can choose to take genetic tests free from the fear that should they test positive, they will face an enormous bill for treatment or insurance, or become priced out of care or cover altogether. Already in the United States of America, where 40 million people have no medical cover, developments in genetics have stirred precisely those concerns. As our understanding of genetics increases, the case for private health insurance as an alternative to the NHS weakens. Thus scientific advance increasingly underpins the moral values that have long lain at the heart of our national health service.
I am today announcing that over the next three years the Government will invest an additional £50 million in England in developing genetics knowledge, skills and provision within the NHS. The White Paper that we are publishing today sets out detailed plans of how that money will be spent. The first step is to boost the capacity of NHS genetics centres. We will spend £18 million on a major programme to upgrade genetics laboratories and will expand the specialist genetics work force with initiatives and investment to increase the number of laboratory scientists and genetics counsellors.
For patients to gain the maximum benefit from genetics, genetics knowledge and technologies will need to permeate the whole of the NHS. So we will spur the take-up of genetics by other specialties by spending more than £7 million to support new genetics initiatives in primary care and mainstream NHS services, such as cancer and coronary heart disease. We will set up a new genetics education and training centre that will work with the professional bodies to ensure that all NHS health care staff receive appropriate education and training in genetics.
The White Paper also sets out our intention to fund further research to help convert genetic discoveries into improved patient care. We will invest £4 million in pharmacogenetic research on existing medicines and set up a new chair and university department in pharmacogenetics.
The most common inheritable single-gene disorder in this country is cystic fibrosis. There are 7,500 children and young adults with this distressing condition in the UK. There is no cure and sufferers rarely survive beyond their 20s. Thus we will provide a further £2.5 million over the next five years to help find a gene therapy cure for cystic fibrosis. We will make available a further £3 million to support gene therapy research on other single-gene disorders and an additional £4 million on gene therapy production facilities for NHS and other public sector researchers. But realising the maximum health benefits of genetics will require more than just support and investment in NHS services and research. It can only be achieved if breakthroughs by the scientific community are matched by public support and understanding in the wider community.
Against a background of great promise, we recognise that genetic advances bring very real ethical and social concerns. We are committed to providing positive safeguards to address those concerns. We have in place an integrated and robust system of regulation. We have already taken action by introducing a moratorium on the use of genetic test results by insurance companies and we have passed legislation to ban human 878 reproductive cloning—one of the few countries in the world to have done so and the first to introduce specific legislation to that end.
Above all, the Government are committed to ensuring openness and transparency in genetic policy making. In 1999 we set up the Human Genetics Commission, which last year produced a major report on the use of personal genetic information. It identified the growing danger of DNA theft whereby sensitive information about a person could be gained by stealing their DNA from, for example, discarded hair, which is then tested without their knowledge or consent. The commission recommended that that should be illegal. I am able to announce that the Government have accepted that recommendation. We will introduce legislation to make it an offence to test a person's DNA without their consent. The new offence will apply in all circumstances except as part of a person's medical treatment where consent is impossible to obtain or the lawful use by the police and courts.
A core ethical principle in the HGC's report is that no one should be unfairly discriminated against on the basis of their genetic characteristics. The Government wholeheartedly endorse that principle. We accept the HGC's recommendation to review the evidence and to consider the appropriate means of addressing concerns in this area. Thus by accepting the two key recommendations of the Human Genetics Commission, I hope that I have demonstrated the Government's willingness to engage in a genuine dialogue on genetics issues. We need not fear genetic advances if we debate the issues openly and put in place the proper public protections today.
We are standing on the threshold of a revolution in health care. By working together, by building on our strengths, by making the necessary investment and careful preparation now, I believe that genetics can deliver real and lasting benefits in health and health care for all of us and everyone in this country. I commend the White Paper to the House.
§ Dr. Liam Fox (Woodspring)
I welcome the Secretary of State to his position and wholeheartedly wish him the health to enjoy his job, which I think all hon. Members would agree is one of the most difficult in the Government. I also thank him for making the statement available in record early time. That is most welcome.
Conservative Members welcome the White Paper and its contents and look forward to the proposals appearing in legislation. I welcome the expansion of genetic services having done some of my medical training at the Du Pont genetic centre in Wilmington, Delaware and look forward to the time when our facilities are up to that standard. It is also worth pointing out that genomic solutions are not necessarily expensive. In fact, if properly applied they may lead us to make better use of the resources that we have.
We welcome the proposals to deal with DNA theft and the need to maintain public confidence. We support the Government's view of the need to avoid discrimination against people on the basis of genetic characteristics and will examine detailed proposals for legislation constructively. We will, of course, support any increased research into cystic fibrosis.
879 However, in welcoming the White Paper as a whole, there are a number of caveats. We must not over-hype what genetics can do, especially in the short and medium terms. The technologies are emerging and are at an early stage. The full potential is not yet known. The mapping of the human genome does not mean that we know the function of all genes. The Secretary of State mentioned the ability to prevent disease. That will always be relative. He will be well aware of the equation of phenotype equals genotype plus environment. Environmental factors will always be an important aspect in illness, which will not simply be based on genetics.
Very few single genes can, or will ever, be identified that will predict with certainty that an individual will inevitably develop a specific condition. The majority, of single-gene defects, if not all, had been identified clinically—for example, haemophilia or sickle cell anaemia—long before gene mapping. Information obtained for research purposes must not be available for forensic, legal or any other purpose not related to that research, or we will find it difficult to maintain a research base in this country.
The Secretary of State rightly said that the genetic revolution would be of maximum benefit when free care for all was provided at the point of need, irrespective of income. However, it is wrong to portray the national health service and an American-style insurance system as alternatives. I am sure that Germany and Switzerland, with their social insurance systems, will be just as able as the United Kingdom—if not better able—to take advantage of the genetic revolution. To portray those options as alternatives is intellectually flawed, politically dishonest and deeply insulting to European countries with well-developed health systems.
There is a problem with the Secretary of State's analysis of insurance. He may be right that the case for private insurance would diminish, but some factors will increase in importance. For some individuals, the exclusion of certain risks may make them more attractive to insurers. The Government have imposed a moratorium, but offshore and online services are almost impossible to regulate, so they need to give more thought to that.
I should like the Secretary of State to deal with four specific questions. First, what is the Government's view about the extent to which intellectual property protection for gene-based inventions will play a role in stimulating the development of new health care products? Secondly, what are the Government's plans to extend counselling services, education and training as their programme develops and in what time scale? Thirdly, in pharmacogenetics, where doctors may be able to select individuals for particular drug use or avoidance, what changes do the Government think may be required in the legislation relating to the National Institute for Clinical Excellence? Finally, the Secretary of State said that the new offence of theft of DNA will apply in all circumstances, except as part of someone's medical treatment when consent is impossible to obtain. 880 What legal advice has he received in relation to people held under the Mental Health Acts who are not able to give consent in the normal way?
§ Dr. Reid
I thank the hon. Gentleman for his double whammy of congratulations on the early dispatch of the statement and my arrival at the Dispatch Box in my new capacity. In that context, I will attempt to make statements available early as far as possible in circumstances which, as he will accept, are sometimes pressurised, so that the Opposition have due time to consider the issues. I do not think that they should be matters of party political debate, although some of the consequences, which the hon. Gentleman raised, lead us into the arena of legitimate choices about the nature of our health system. May I also say that I was encouraged to present the statement early following your strictures on a previous occasion, Mr. Speaker, when I was in a different position?
I agree entirely with the hon. Gentleman, who brings to these matters a great deal of experience from his personal background and studies, that we must not over-hype the prospects and impact of the revolution in health care created by genetics. We should recognise the advances that can be achieved in diagnosis, treatment and, in some cases, potential cures. However, we must strike a balance between the euphoria that comes with new inventions and the magic wand fantasy that is sometimes created by commentators on the one hand, and the deep suspicion, lapsing into prejudice, of anything that involves scientific advance on the other. The hon. Gentleman is right about that.
As for intellectual property rights and patents in general, we all understand that they do not entail the ownership of a particular gene or gene sequence. They protect research into a particular application of a gene or gene sequence, and those intellectual property rights and, indeed, patents are necessary to encourage people to invest in a number of different areas. We recognise that but, of course, we must make sure that such rights do not inhibit the NHS from offering the applications that they want to offer the people of this country. For instance, we have been asked about testing people for a disposition to breast or ovarian cancer, and the implications for companies that may be carrying out research in that field. We will not be blackmailed in any way or pushed into stopping women who may be predisposed to certain forms of breast or ovarian cancer from taking the necessary tests, because we believe that we have a moral, legal and political responsibility to offer that application.
The hon. Gentleman raised the issue of counsellors. We need not just the physical investment of money and premises and the bringing together of technical knowledge but people, whether geneticists, genetic counsellors or others. We have made provision in the White Paper issued today for sufficient money to increase the number of genetic counsellors, and we intend that that should be a building block for the future. I agree with the hon. Gentleman about that.
On the point that the hon. Gentleman made about mental health patients, I should be obliged, given the short time for which I have been in post, if he allowed me to write to him about our legal advice on mental health patients. Obviously, there are some circumstances under which it is not possible to obtain permission—for 881 example, from victims of a road accident or people who are comatose or unconscious—but for the benefit of the victim of the accident or the patient, it may be necessary for identification or the purposes of administration of medical assistance, to take a sample for DNA testing without consent. However, on the specific issue of mental health patients, I should like to write to the hon. Gentleman.
Finally, on the larger point made by the hon. Gentleman, there is a debate to be had on the implications for the nature of health care provision in this country of the potential predictability of an individual's health. I have already expressed my own view in the statement. It is undoubtedly true that there will be some individuals, as the hon. Gentleman said, who, because of genetic discoveries, treatment and potential cures, will be much better off under private health insurance than they otherwise would. That is surely the point—there will be some individuals who, because of the predictability of their future good health, will be much better placed in a sort of super-class, and there will be many individuals who, because they are predicted to suffer from bad health, will find it very difficult, if not impossible, to get private insurance or health cover. My own view is that recognition of that, together with changing circumstances, reinforces rather than detracts from the moral case for the national health service by underpinning it with scientific advance. I have no doubt at all about that. Time will tell whether our system will stand those tests better than the social insurance or private insurance systems elsewhere. However, I personally have no doubt not only that the NHS is as relevant as ever, but that with every passing year of medical discovery it is becoming more relevant to the people of this country.
§ Dr. Evan Harris (Oxford, West and Abingdon)
May I, too, welcome the Secretary of State to his post, as well as thanking him for early sight of the statement and the accompanying White Paper? I should also like to congratulate the Government on the establishment of the Human Genetics Commission, which has already done valuable work in promoting public debate and consultation. It is also timely to take the opportunity to congratulate those involved in the human genome project, particularly from this country, and recognise the work of those involved in the discovery of DNA. I extend the Secretary of State's recognition of Crick and Watson to include the contribution of Rosalind Franklin, because far too often, history, including science history, is written by men.
The Secretary of State said that the new genetics will lead to the prospect of four new things. First, with reference to more accurate diagnosis, the current legislation surrounding pre-implantation genetic diagnosis, requires lengthy court cases and appeals—for example, in the case of the Hashmis—or requires people like the Whitakers to go abroad in order to have the prospect of saving the life of a sibling. Is the Secretary of State satisfied that the Human Fertilisation and Embryology Act 1990 is sufficient to meet the challenges 14 years on? Will he consider introducing new legislation to bring that Act, which has stood the test of time reasonably well, completely up to date?
882 The right hon. Gentleman mentioned the prospect of more personalised prediction of risk. Does he recognise the concern that exists about home testing genetic machines, and the prospect of vulnerable consumers being provided with information outside the context of advice that they require? The BBC suggested this morning thatDr. Reid is likely to counter-balance this"—that is, the greater use of genetic testing—by pledging new safeguards to minimise the risk of discrimination against people whose test result make for bad news",and that the White Paper was likely toplace restrictions on the sale of over-the-counter testing kits for inherited conditions.That is not dealt with in the White Paper or in the right hon. Gentleman's statement, and I should be grateful if he would clarify his intentions.
The Secretary of State spoke of the prospect of new gene-based therapies. That is an exciting prospect. I am a volunteer in a trial of a DNA vaccine for HIV. Does the right hon. Gentleman recognise that the prospect of such therapies being available in the developing world is much more limited, and that the Government need a policy to ensure that the benefits are available to deal with disease in the developing world? Concentration on such work must not detract from work on diseases that do not require genetic treatment or diagnosis and affect the poorest in the world.
The prospect of targeted prevention and treatment was mentioned. Can the Secretary of State reassure us that the new patient contract proposed by his party will not oblige patients to undergo genetic tests in order to register with a GP or to continue to get treatment from a GP?
We welcome the proposal to legislate to tackle DNA theft. I agree with the right hon. Gentleman's analysis of the inequity of insurance-based health care, but does he accept that other forms of insurance, the denial of which can drastically affect one's ability to go about one's business, is a real problem? Does he accept that the voluntary moratorium is insufficient? Can he not use the Bill that he proposes as an opportunity to legislate to prevent insurers requiring genetic tests before providing cover?
We welcome efforts for new gene therapies for diseases such as cystic fibrosis, but does the Secretary of State recognise that our transplantation laws are inadequate? Many people who could be cured by transplantation are urging the Government to update those laws to enable the maximum possible use, with consent, of available organs.
Finally, does the right hon. Gentleman agree that public education is important, particularly as the genetic field is the area where science often faces most strongly the forces of anti-science? In that context, does he accept that language is important, and that referring, as the White Paper does, to screening babies at birth, instead of using terms such as "high-risk identification", is not helpful in the debate, as it leads people to misunderstand the true potential and power of those tests? We need to keep the public on board. The White Paper is a good start, but I hope the right hon. Gentleman will accept that there is still more to be done.
§ Dr. Reid
I accept that there is a lot more to be done, not least because the pace of change in genetics, as in many modern scientific advances, is on an exponential curve. We must constantly examine not only the medical, but the legal, political and ethical issues raised, and those are not small issues.
The hon. Gentleman asked a large number of questions. I shall try to answer them all, without impinging upon the indulgence of the Chair. If I miss any, I hope that I can write to the hon. Gentleman. He asked whether we intended to provide information for patients and the public on genetics. Yes, we certainly do, and we have made the finance available for that. NHS Direct has a role in that, and there are other ways of providing information.
Of course, we will not allow ourselves to be consumed only with genetic health issues, interesting though the knowledge and associated technologies are. The hon. Gentleman is right to point out that in many parts of the world and in the World Health Organisation's programmes, the more conventional approaches are extremely important. We will continue to support those as part of our overseas aid and in other ways.
We do not envisage any compulsion on patients. If the hon. Gentleman reads the White Paper, he will see that we stand against anyone being tested against their will, surreptitiously or otherwise. On the moratorium on insurance companies, the hon. Gentleman may know that there are three years to run on the existing moratorium. There will be further discussions on that. It is a tricky issue, taking into account the rights of the individuals, the companies and everyone else involved. We have made plain our view, and we will try to see that the matter can be satisfactorily resolved in the three years remaining.
The hon. Gentleman asked about changes that may be necessary in the legislation. The Government are committed to ensuring that the key legislation, such as the 1990 Act, is up to date with new developments, and we will ask the Human Fertilisation and Embryology Authority to keep these matters under review and to make any recommendations that it considers necessary. The HFEA is charged with that in the White Paper.
On legislation to ban genetic discrimination, the Human Genetics Commission considered the matter in its report on personal genetic data. The Government agree with its conclusion that there is no systematic use of genetic information by employers, and that there is little evidence of unfair genetic discrimination. Nevertheless, in light of what I said about the moratorium and the use of genetic tests by insurers, we need to build on that. I announced today in the White Paper that we accept the HGC's recommendation that we consider the evidence for genetic discrimination in employment, insurance, education and other areas and consider what steps to take in the light of that review.
Finally, like the hon. Gentleman, I extend my tribute to the scientists and members of organisations such as the HGC, whom I met this morning in my first public official duty, and a pleasant one it was to discuss some of these issues. I can tell the House that in 35 minutes I heard more contributions of a substantial nature from more people than I have ever heard in my discussions in politics. There were some pretty weighty contributions, and I and others can take a lesson in how to put our case 884 briskly. Not only did I pass on our congratulations and thanks to them, but yesterday I saw in action the comfort that the revolutionary new genetics knowledge and technology can bring to so many families, when I visited the Great Ormond Street hospital. I saw there families who were afflicted by a gene disorder, FH—familial hypercholesterolaemia. There are some 100,000 people in this country who may have that and who could be helped by advances in genetics, as they are being helped at Great Ormond Street. I have no hesitation in agreeing with the hon. Gentleman that we all owe a tribute to the doctors and scientists who have been involved in that.
§ Jim Dowd (Lewisham, West)
I warmly welcome the statement and the publication of the White Paper by my right hon. Friend. I particularly welcome his remarks about cystic fibrosis and research into other gene-based therapies. He will know that current research indicates that a cure is within reach, at a relatively small cost. Will he undertake to meet representatives of the Cystic Fibrosis Trust, who have done so much to encourage research in this area over recent years, to try to find a course for an early end to that terrible disease?
§ Dr. Reid
As my hon. Friend said, gene therapy is a new and innovative form of medical treatment which holds great promise, although we are all agreed that we must not over-hype the possibilities or fail to recognise the real assistance that can be given, medically and socially, to many families who have been in terrible distress. Today I have allocated additional funds for the treatment of cystic fibrosis, and I shall be only too pleased to meet representatives of those who, for many years, have borne the burden of the disease in their families and who, I hope, will take some relief and delight today from the fact that the Government are putting even more resources into treating and curing that disease.
§ Mr. Henry Bellingham (North-West Norfolk)
I welcome what the Secretary of State said about cystic fibrosis—many of my constituents and others in Norfolk will be very pleased about his comments—and his remarks about the ethical framework. However, I should like to pick up on his comment that, as our understanding of genetics increases, the case for private health insurance as an alternative to the NHS weakens. Surely, one of the current flaws in the NHS is its risk-averse culture and the huge budgetary restraints that often lead to rationing of drugs. For example, the other day, I met a group of constituents dealing with motor neurone disease, and they were very concerned about the rationing of a key drug. Surely the way forward, to maximise the benefits of genetics, is a public-private partnership.
§ Dr. Reid
I would not want the hon. Gentleman to think for one moment that I do not appreciate or encourage the private sector's becoming involved in the development of treatments, cures and so on. In assisting us in bringing health care to the people of this country free at the point of need, the private sector plays a great role through private finance, public-private partnerships and so on. I have no hesitation in saying that; it applies outside and inside the field of genetics.
885 I was making a rather different point. If we look away from who provides the service to the patients—I believe that the national health service should be a patient-centred health system—we can see that, from the patients' point of view, the predictability of health brings with it a danger of predicting that one's health will be much worse than average in future. Such a prediction will place people at a severe disadvantage in a system that depends in any way on private insurance. Inevitably, away from the average, we will create those whom I called a super-healthy class, and perhaps a super-underclass. It is only through an a priori agreement by everyone in this country that, irrespective of what is predicted for somebody, they will be provided with health care free at the point of need, that we can have not only a moral system, but one that is underpinned by scientific predictive advances. That is the point that I was making.
§ Mr. Jim Cousins (Newcastle upon Tyne, Central)
I congratulate the Secretary of State on his statement. I should like to pick up directly on the last very important point that he made in his previous reply. I am sure that he will be aware of the work of Professor Norman Burn and the team in Newcastle who have identified a gene that greatly increases the disposition to and risk of bowel cancer. He will also be aware that participating in a bowel cancer screening programme, undergoing a colonoscopy or, further down the line of risk, having a non-cancerous growth removed from the colon or bowel can at present be declarable conditions for insurance purposes which can trigger additional costs not only in health insurance, but in travel insurance, mortgage protection and a range of life insurances. Will he address that point and prevent the danger that he set out in his previous reply from arising?
§ Dr. Reid
I am aware of the work to which my hon. Friend referred. Indeed, I spoke to some of those involved in it this morning at a breakfast seminar. On the specific point that he raised, I was making a general point about the national health service, but he made it with regard to a specific case and in relation to health insurance and other types of insurance. We have said that we have created a position in which it is not possible for insurers to insist that someone reveal the result of a genetic test. That is the position that has been agreed during the last period, in which there has been a moratorium. It will continue for three more years. During that period, it is our intention to try to arrive at a position not far removed from what he was suggesting, but we have to try to do that in a rather tricky world in which the rights of insurance companies and the way in which they function must be recognised, as well as the rights of individuals.
We recognise that insurance companies have to evaluate risk and take into account evidence and statistics when doing so. At the same time, we want to avoid a position in which, as a result of genetic predictability, any individual cannot get insurance. Some tricky issues are involved. It is fair to say that, thus far, there has been good will on all sides, and I hope that that will continue. It will certainly do so for three years, which will give us time to reach some form of accommodation that will be suitable for all sides.
§ Mr. Paul Goodman (Wycombe)
The Secretary of State seems to be saying that the genetic super- 886 underclass—a phrase that I think he used a moment ago—is safe and secure only in a system that is free at the point of use. If that is so, can he explain what perils that group faces in countries that have social insurance systems? If the answer is that such people do not face substantial perils in those systems, why is he so certain that we have nothing to learn from our European neighbours, who run systems of precisely that kind?
§ Dr. Reid
Heavens! I would never suggest that I have nothing to learn from anyone—even Opposition Members. We can all learn; part of the virtue of this House is that, through dialogue, we occasionally learn. I was saying not that other systems could not provide adequate health care, but that as the predictability of an individual's health becomes verifiably ascertainable for the future, a system that is based on an a priori agreement that people will be treated irrespective of that information is much more likely to be able to cope with the social tensions caused by predictability and division.
I have always believed that the moral case for a national health service in respect of which we all agree that everyone will get health care that is free at the point of need is overwhelming. I also happen to have good reason to value that service, as it saved my life when I was a young man. I believe that the increasing predictability that comes with the extension of genetics is giving that a further scientific underpinning, because if we do not have a service that is based on an a priori agreement that we will be covered by a national insurance policy whatever life may hold for us and may be predicted to hold for us, it will become much more difficult for there to be a cohesive society, as some people will find it difficult, if not impossible, to get insurance.
§ Laura Moffatt (Crawley)
Today's announcement has brought very sharply into focus the benefits—as if Labour Members needed to be told—of a universal health service that is free at the point of use, including for the families that are suffering from the genetic conditions that cause so much distress. Does my right hon. Friend accept that we need not only to get to the representative groups that rightly campaign on these issues, but to ensure that consultation with families is understandable and is conducted in language that they know how to use? Does he accept that we must also use Members of the House to assist in consultation in respect of the White Paper and to bring back to the House the issues that those families want to raise with the Government in a way that we know is productive and inclusive?
§ Dr. Reid
Certainly, as my hon. Friend said, we should always seek to secure more patient involvement. That is part of the general posture that I shall attempt to adopt in trying to make the patient the centre of our attention, to decentralise decision making so far as I can in respect of national standards and comprehensive provision, and to involve patients in the design of the system, which is there to serve them and not us or anyone else.
My hon. Friend again makes the point about the consequences of increasingly being able to predict someone's health care—although, as the hon. Member for Woodspring (Dr. Fox) said, we are some way off being able to do that with great authority for everyone. If health care finance is based on private insurance, any 887 insurance company will tend to use the results of genetic testing to predict and to limit its risk. If the test predicts the likelihood of disease, the insurance premiums will be very high—for most people, unaffordable. That is self-evident in the long run. Consequently, private medical insurance will tend to cover only those people without genetically predisposed risks and fail to cover the rest. I did not make that the central point of our discussion, but if hon. Members wish to contest it I am willing to argue the case on the ground of the national health service.
§ Sandra Gidley (Romsey)
The commitment to developing gene-based therapies is welcome. Can the Secretary of State confirm whether such therapies will be subject to appraisal by the National Institute for Clinical Excellence? If so, will he concede that NICE has often delayed the implementation of a therapy and, given its very heavy forward workload, what will he do to ease the situation?
§ Dr. Ian Gibson (Norwich, North)
In five or 10 years' time, this document will have made a significant difference to the lives and health of people not only in this country, but in developing countries. I am tempted to put forward the names of my right hon. Friend and his predecessor for a Nobel prize, because this contribution will be as world shattering as that of Watson, Crick and the others. It wall empower people to ask about their predispositions, which will enable them to make decisions about their diet and lifestyle—
Mr. Deputy Speaker
Order. The hon. Gentleman should not be making a statement, but asking a question. Can he make it short?
§ Dr. Gibson
Would my right hon. Friend agree that the new emphasis on prevention represents a radical shift in our national health service that we all welcome?
§ Dr. Reid
The answer to my hon. Friend is yes on every count, with one exception. Modesty forbids my being put forward, even by my hon. Friend, for the Nobel prize, although that will be a great source of envy to all my colleagues in Government, not all of whom have been suggested by him as contenders for a prize of any sort.
My hon. Friend is absolutely right. One of the great benefits of the path that we have followed on genetics is the information that will allow us to rely on prevention to a far greater measure and with greater success than previously.
§ Mr. Mark Francois (Rayleigh)
I welcome what the Secretary of State said about cystic fibrosis, because that is important information for those of my constituents who suffer from that disease.
888 In a more partisan spirit, may I challenge his point about insurance? He sought to argue that genetics will have an implication for people with some form of health insurance, but—as my hon. Friend the Member for Wycombe (Mr. Goodman) noted—in a social insurance model that risk is, by definition, spread over a considerable number of people. That obviates the Secretary of State's point about increasing the price of insurance for individuals.
§ Dr. Reid
We commandeer almost every field of learning on this side of the House.
In the face of the increasing predictability of individuals' health—we are not there yet, but it will come—any civilised society can base its health care only on an a priori agreement that we will all pay for it through general taxation and will all benefit from it, irrespective of any evidence about our own futures. That is a decision that was taken many years ago—chiefly a political and moral decision, although not exclusively, because it was taken on the basis of experience, too. The underlying political and moral values of the national health service have increasingly been underpinned by scientific discovery and practical reality.
§ Andy Burnham (Leigh)
I add my welcome to the White Paper, which charts the right course through a difficult area. I, too, particularly welcome the focus on cystic fibrosis. As my hon. Friend the Member for Lewisham, West (Jim Dowd) said, there is a realistic chance of a cure, but we do not know how long it will take for the research programme to make the all-important breakthrough. With that in mind, now that we have embarked on the course of trying to find a cure, can we stick with it and work with the Cystic Fibrosis Trust to get the result that we all want?
§ Dr. Reid
Indeed. I know that my hon. Friend plays a valuable role on the Select Committee on Health. Today, I agreed to meet representatives of the Cystic Fibrosis Trust to discuss the matter further with my hon. Friend and any other Members who are interested in it. We are putting millions of pounds into that field, as well as considerable financial resources into others. After today, there will be an extra £50 million—a major programme of investment—to upgrade the NHS genetic testing laboratories; to bring in additional counsellors; to pilot schemes, not only on cystic fibrosis, but on familial hypercholesterolaemia and other areas; and to bring awareness of and education in the benefits of genetics to the NHS in general. I would not claim that today is as major an event as my hon. Friend the Member for Norwich, North (Dr. Gibson) suggested, but it is a not insignificant White Paper and not an insignificant day.
§ Mr. David Cameron (Witney)
Will the Secretary of State take it from me, as the relatively recent father of a child with severe epilepsy, cerebral palsy and 889 developmental delay, and as someone who has had genetic counselling in the past month, that the statement and the Government's approach will be warmly welcomed by many families with disabled children? Does he recognise that parents of disabled children are often told that their child's condition is idiopathic or cryptogenic, which actually means that no one has a clue as to its cause? Is it not the case that genetic research provides the best chance of getting to the bottom of such issues and giving families hope for the future? Could he clarify how much of the new resources will go into research into disability in general and into epilepsy in particular?
§ Dr. Reid
I can add little to the hon. Gentleman's remarks. No one bears better testimony to the potential and actual benefits of what we discussing than those who are directly involved, or in families who are involved, in coping with such difficulties and stresses. His eloquence speaks for all those families who can see, if not immediate relief, at least the possibility of some relief in future. I am delighted that he, along with many others, will benefit immediately or may benefit somewhere down the line.
We are putting some £7 million into new initiatives to get genetics-based health care into primary care, and we are putting money into the two pilots that I mentioned. Among a range of other initiatives, we have pilots in six cancer network areas and we are piloting on heart disease too. I cannot answer the hon. Gentleman's specific question off the top of my head, but I shall write to him to clarify not only the finances, but the range of support that we are giving to the development of this very important area.
§ Dr. Doug Naysmith (Bristol, North-West)
I welcome my right hon. Friend to the Dispatch Box in his capacity as Secretary of State for Health. I particularly welcome his strong endorsement of the principles of the national health service and his commitment to them. He mentioned Francis Crick. Of course, that was a wonderful achievement for British science, which still underlies all that we do now. However, genetics began in a previous century with a monk called Gregor Mendel, who separated rounded peas from smooth peas. Ever since his work became known, this has been a controversial subject in science—
§ Dr. Naysmith
Will my right hon. Friend explain how he intends to ensure that the ethical and scientific aspects of this science are kept apart, as he applies them to medical treatment in the national health service?
§ Dr. Reid
Mr. Deputy Speaker, I am sure that you were quite right to interrupt what I have to admit to having found a fascinating exposition of the genetic equivalent of Newton's apple, which appeared to involve mushy peas, if I understood my hon. Friend correctly. I will get the end of the story from him later.
890 On the serious point that my hon. Friend raised, of course we recognise that genetic advances bring very real ethical and social concerns. There is a difficult balance to be struck here. He mentioned the history of these matters. All scientific work has resulted in society having to develop an ethical framework in which to consider scientific advances. The advances are now being made at such a rate that it is often difficult for us to develop an ethical framework to cope with them at the same time. We have already taken action, however, by introducing the moratorium on some of the practical implications that will flow from these advances. We are one of the few countries in the world to have passed legislation to ban reproductive cloning, and, above all, we are committed to ensuring openness and transparency in the debate on genetic policy making. We need to have a debate; we should not take anything for granted. This is not a scientific advance that we can just apply without considering its ethical consequences. This is the place for that debate, and it should be open and inclusive. I am sure that, at the end of the day, the debate on the ethics of these issues will not come down to any easily defined party positions.
§ Bob Russell (Colchester)
May I make what is for me a somewhat rare observation by warmly welcoming the statement from the Government today? I would like to draw the attention of the Secretary of State to early-day motion 1, which has so far been signed by more than 150 Members across the House, and which relates to those adult sufferers of cystic fibrosis who still have to pay prescription charges. Bearing in mind the fact that the Cystic Fibrosis Trust believes that the sum involved in relieving those sufferers from paying prescription charges would be about £100,000 a year, will the Secretary of State consider such a move as a serious option? I am not asking for anything revolutionary—merely the implementation of what was in Labour's 1997 general election manifesto.
§ Dr. Phyllis Starkey (Milton Keynes, South-West)
Among the potential benefits of pharmacogenetics will be the more effective targeting of drugs towards patients on whom they will work—as opposed to patients on whom they will not—and the more effective targeting of preventive health advice. This will mean a profound rethinking of the way in which primary care works. I know that the Secretary of State has announced certain pilot projects in primary care, but will he also give some thought to how primary care trusts could be thinking now about the implications for the future planning of primary care services, to ensure that we get the full benefit of these scientific improvements as they are introduced?
§ Dr. Reid
I agree entirely with the thrust of both points that my hon. Friend raises. People tend to think that the only use for the latest discoveries in gene therapy is to identify a gene that can be mended, leading to a cure. In fact, the information and the accuracy of diagnosis now available—which can lead to treatment 891 modifications for those who can benefit most, or for those who might suffer side-effects, for example—is equally immense. We should not forget that.
On my hon. Friend's second point, this is not just a specialised form of study and application—although it is that. It also has the potential to revolutionise the whole of primary care. That is precisely why we have made provision in the White Papers not only for the scientific and physical matters under investigation, but for the wider educative process and for entrenching a knowledge of genetics and gene therapy within the mainstream of the NHS, and for educating a broad spread of those working in it about their benefits about the associated technology.
§ Mr. Tom Watson (West Bromwich, East)
Today's announcement will further enhance the UK's reputation as a world leader in genetic medical science. Is my right hon. Friend aware of the research teams in London, Oxford and Edinburgh that have already drawn up detailed research proposals in partnership with the Cystic Fibrosis Trust? When he meets representatives of the trust, will he consider its proposal that, for only £15 million over three years, the hopes and dreams of the 7,500 sufferers of cystic fibrosis in the UK could be realised?
§ Dr. Reid
I will look at that issue, but my hon. Friend will realise that I cannot make a decision on it today. There is an almost infinite demand for resources, and a huge well of human suffering and discomfort. We try, so far as we can, to allocate the resources in terms of priorities—using, if I may say so, the language of socialism, as Nye Bevan once said. He was not an Englishman either.
892 On my hon. Friend's serious point, we have announced today £2.5 million for cystic fibrosis, £3 million for other single-gene disorders, and £4 million to be spent providing the NHS and public sector researchers with access to high-quality genes. In all, we are providing £50 million to advance this programme. I am not suggesting that that is sufficient, but within the overall priorities and pressures that are put on the NHS budget—which treats 1 million people every 36 hours—this is an indication of how seriously we take the matter. I hope that it will offer some relief immediately, and some hope in the longer term to the many families who have suffered the stress, discomfort and pain of seeing a loved one suffer from cystic fibrosis.
§ Mrs. Anne Campbell (Cambridge)
In welcoming my right hon. Friend's statement, may I ask him to pay particular attention to those individuals who choose not to know what their DNA is, or whether they might have a single-gene disorder for which there may, as yet, be no cure?
§ Dr. Reid
Yes, I shall pay attention to that matter. We must try to avail ourselves of the advantages in scientific advancement at the same time as avoiding compulsion. I hope that we will extend the range of our knowledge and the number of people involved in this programme, through the UK biobank. This is an ambitious flagship project, undertaking vital research; as I have pointed out today, it is the largest of its kind in the world. We also hope that the biobank will hold data from 500,000 volunteers, but that will be done on a voluntary basis. We will protect the information that is held, and, more generally, we are doing what we can to protect the privacy of those who wish to undertake genetic testing to satisfy themselves as to their own health. We would also wish to ensure that we were not involving ourselves in any element of compulsion in regard to the new scientific advances.