§ 3.40 p.m.
§ Lord WarnerMy Lords, I would like to repeat a Statement which has been made by my right honourable friend the Secretary of State for Health in another place. The Statement is as follows:
"With permission, Mr Speaker, I wish to make a Statement about the White Paper on genetics and healthcare 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"Today's White Paper could not be published at a more appropriate time.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 145 genes which 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 an individual has of developing the country's biggest killers—cancer and coronary heart disease—as well as those like diabetes which 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 just at treating disease in novel ways 1put also at preventing it.
"Thus genetics has the potential to bring immense benefits for patients. Above all, genetics promises a more personalised approach to healthcare 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. This vision calls for an integrated strategy—a 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 this will be achieved.
"I believe there is no other healthcare system in the world 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 where the prospect of a "genetic superclass" 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.
"Our NHS means that citizens in the UK can choose to take genetic tests free from the fear that should they test positive they 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 these concerns. As our understanding of 146 genetics increases, the case for private health insurance as an alternative to the NHS weakens. Thus scientific advance increasingly underpins the moral values which have long lain at the heart of a 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 we will expand the specialist genetics workforce with initiatives and investment to increase the number of laboratory scientists and genetics counsellors.
"For patients to gain the maximum benefits from genetics, genetics knowledge and technologies will need to permeate the whole of the NHS. We will spur the take-up of genetics by other specialties by spending over £7 million to support new genetics initiatives in primary care and mainstream NHS services such as cancer and CHD. And we will set up a new genetics education and training centre which will work with the professional bodies to ensure that all NHS healthcare 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 we will 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 twenties. We will provide a further £2.5 million over the next five years to help find a gene therapy cure for cystic fibrosis. And we will make available a further £3 million to support gene therapy research on other single gene disorders, and £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 in 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 147 passed legislation to ban human reproductive cloning—one of the few countries in the world to have done so.
"Above all, the Government are committed to ensuring openness and transparency in genetic policy-making. In 1999, we set up the Human Genetics Commission. Last year the commission 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 his DNA through, for example, discarded hair and then testing it without his knowledge or consent. The commission recommended that this should be illegal. I am able to announce today that the Government have accepted this recommendation. We will introduce legislation to make it an offence to test a person's DNA without his 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 police and courts.
"A core ethical principle in HGC's report is that no one should be unfairly discriminated against on the basis of his genetic characteristics. The Government wholeheartedly endorse this principle. We accept the HGC's recommendation to review the evidence and consider the appropriate means of addressing concerns in this area.
"By accepting these 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 healthcare. 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 healthcare for all of us.
"I commend this White Paper to the House".
My Lords, that concludes the Statement.
§ 3.49 p.m.
§ Earl HoweMy Lords, the Minister may well have lost count of the number of times he has been welcomed to his new post during the past few days. However, as this is the first opportunity I have had to make a contribution on that theme, I hope that he will allow me to offer my sincere congratulations to him on his appointment. I look forward to our future exchanges on health and social services policy issues, both in this Chamber and outside.
I welcome the Statement. The importance of leading-edge science and its potential benefits to society cannot be emphasised enough. Politicians of all parties have a duty to trumpet those benefits—not least in the field of genetics and other biological research in which public understanding lags behind that of the specialists—at 148 every legitimate opportunity. I say that because the Statement mentioned explicitly the need for public support and understanding of genetic research.
I agree with the Government that transparency and openness are essential elements of the public debate. Without such openness, misinformation and antiscientific reporting have a habit of gaining currency, and it is often difficult to then recapture a sense of balance in the popular media. One only has to think of the debate on genetically modified crops and foods to see how true that is.
Apart from that general situation, the work being done by the Sanger Institute through the good offices of the MRC and the Wellcome Trust depends on the recruitment of large numbers of people to donate samples and provide data for the biomedical collection that is being assembled. That collection will be needed to convert a huge amount of raw genetic code into potentially useful applications. In that context, I hope the Minister will agree that the choice of phraseology and language used to describe the procedures employed in research of this kind is of no little importance.
I welcome the new money earmarked for research—especially for research into cystic fibrosis and pharmacogenetics—and for investing in the provision of genetics knowledge within the NHS. It would be helpful to hear a little more about how the Government envisage the delivery of services at PCT level, not only from a clinical standpoint as new diagnostic techniques become available, but in terms of counselling and advice to patients. We will shortly have a nationwide ICAS service. Do the Government intend to incorporate this rather different kind of counselling and advocacy into the services offered by ICAS, or will delivery be achieved in another way?
I also welcome the Government's intention to stem all forms of unfair discrimination, and to prohibit DNA theft. We, for our part, will look constructively on any related legislation that the Government bring forward. However, we need to take great care before allowing access by the police to scientific data collected through scientific research. Also, we must examine carefully issues of patient consent. Can the Minister expand on that matter? Might he add some further comments about the Government's approach to the insurance industry and the regulation of insurance? I refer not only to health insurance, but to general life insurance and pensions.
Are the Government committed in principle to securing an extension to the moratorium agreed with the industry some time ago?
Great as the potential benefits are of this technology, there is a danger that they may be overhyped too early. I hope the Minister will agree that it is the responsibility of Ministers and others in public positions to carry the public along with the science—at a pace commensurate with its actual progress.
§ 3.54 p.m.
§ Lord Clement-JonesMy Lords, I too welcome the Minister's reading of the Statement in another place. This will be a very good day for those families who have genetic predispositions and genetic disabilities and diseases such as cystic fibrosis and epilepsy. I agree that this paper is an extremely useful step forward; not only in terms of the additional resources that have been pledged by the Government, but also in terms of the imaginative and comprehensive way in which it plans to integrate developments in genetics into the health service.
An interesting point made in another place earlier today and again in the Statement was I that the moral values of the NHS in terms of social insurance are underpinned more than ever by advances in genetics. Many of us are concerned about the interface between genetic testing and private health insurance, and about the futures of those who cannot obtain private health insurance simply because of their predispositions and genetic make-up. The NHS is particularly important in underpinning that social insurance aspect which now comes to the fore and which will spread the risks.
That leads me to the question of the moratorium on genetic testing by insurance companies. It is very important that—at the very least—that should continue. We have had several discussions in the House about aspects of genetic testing, but we would like to see legislation. The Government have mentioned several areas for legislation in the White Paper, but they do not specifically say that they will legislate to prevent insurance companies insisting on genetic testing. A voluntary agreement only goes so far; it is not an adequate safeguard on a matter of such importance.
There are issues about treatments that are developed using genetic technology and know-how. For instance, how will NICE appraise those new treatments? Will NICE have the capacity to do that? Conventional treatments take up enough of NICE's resources, and clinicians, patients groups and others invariably show great impatience when NICE cannot deal quickly enough with that work.
I should again point out to the Minister that those with genetic conditions do not automatically qualify for free prescription charges, as do many other sufferers of chronic conditions. In tackling these genetic conditions, we should recognise that their treatment can be extremely expensive. We should alter the NHS rules and allow free medicines in those circumstances.
We on these Benches agree with the proposed controls on the supply of genetic tests to the public, as proposed by the Human Genetics Commission. We have passed comment before on the biobank project; we welcome the sampling and research I hat is to be done, but are concerned at the proportion of the MRC's funding devoted to it. I hope that the project can proceed—but without crippling die MRC's capacity in other fields.
150 We also agree with the proposals for the use of genetic information. That is an incredibly important new aspect of human rights, and it should be legislated for in the manner proposed.
Echoing an aspect of what the noble Earl, Lord Howe, said, it is extremely important that the public take on board and understand the developments and the way in which the Government propose to mainstream genetic treatments and developments. It is also important that they understand that the progress that we can make must genuinely go through, not just the experts in the NHS, but also through other clinical staff. There are also the patient and public involvement processes that have been set up over the past year and the fact that there will be a great many questions about the use of genetic information, genetic sampling and so on. They need to be fully prepared for that because the last thing we want in the middle of progress is any public apprehension about such technology.
§ 4 p.m.
§ Lord WarnerMy Lords, I thank noble Lords for their supportive remarks. I reassure noble Lords that I cannot be welcomed here too often. We agree entirely with the point made about not over-hyping the matter. It has to be taken forward in a balanced way, taking the public and healthcare professionals with us.
On patient consent, it is clear that we are responding to the Human Genetics Commission's concerns that people should not be tested without their consent. We shall explore the detail of how that legislation is put into effect. The issue relating to understandable concerns about taking care over access by the police to such information can be dealt with in that context.
On the insurance industry point, the position is that we negotiated a five-year moratorium on the use of genetic test results by the insurance companies. We are only part way through that period and we shall want to discuss with the industry, through the Government's genetics and insurance committee, and with other stakeholders how we formulate and agree a longer-term policy. I do not believe that any prior decisions have been made about that. It can be taken forward on a consultative basis with the industry.
On Biobank, we shall be able to proceed comfortably without crippling the MRC in its work. The resources are being provided to take forward Biobank.
The position on NICE is that areas of new procedures and testing in connection with genetics will be treated like any other new procedures in the NHS. If NICE is involved at an appropriate point in reviewing that area, we would need to ensure that the capacity was there to handle that as the need arises.
The noble Earl, Lord Howe, raised workforce issues in primary care. There is a big education issue with GPs and their staff to bring everyone up to speed and to keep them up to speed in what is a fast-changing area.
On the specifics concerning counsellors, when the detail of the White Paper can be taken forward, we shall increase significantly the number of genetics 151 counsellors. Over the past year the department has provided start-up funding for 28 new posts and we are funding additional posts on the new MSc course in genetic counselling at Manchester and Cardiff. We are also funding a new scheme of structured training posts for people from a variety of healthcare backgrounds to train as genetics counsellors. We shall try to take the matter forward as fast as we can.
§ 4.3 p.m.
§ Lord Jenkin of RodingMy Lords, perhaps I may draw the Minister's attention—if that has not happened already—to the report of the Select Committee on Science and Technology of this House, on which I had the honour to serve when the committee inquired into human genetic databases, under the chairmanship of the noble Lord, Lord Oxburgh. One subject that the noble Lord, Lord Warner, has not mentioned in the Statement—it may be in the White Paper but I have not had time to study that—is the capacity of NHS ICT systems and computer technology systems to handle what will be huge volumes of immensely complicated data.
Does the Minister recognise that the Select Committee doubted the capacity of the health service to be able to commission and to manage the quantum leap in the provision of ICT services necessary if the potential of the genetics revolution is to be achieved, as the Statement has foreshadowed? Is there not a risk—I put it no higher than that—of the health service failing, as has happened in the past with NHS computer systems, to be able to match the discoveries of the scientists and their application by the doctors with the ability to process and to store the vast volumes of information that will be required? That could lead to the kind of disappointment that noble Lords on all sides of the House would want to do everything possible to avoid.
§ Lord WarnerMy Lords, I hope I can be forgiven for saying that in my short time in office I have not read every Select Committee report, including the one to which the noble Lord has referred. It is on my list of homework to be undertaken as quickly as possible.
In terms of IT, the noble Lord will know that the Government have an ambitious strategy for improving IT in the NHS and have strengthened considerably its strategic and project management capability in that area. He is right to identify the risks. There are considerable risks in this area and they will need to be taken forward in taking forward the Government's IT strategy.
§ Lord TurnbergMy Lords, the report will be welcomed by the genetics community. I have to express an interest as chairman of the panel that advised the Government on the background to the report, so I would say that, wouldn't I? I hope that the wider public will welcome the report which will undoubtedly help to prepare the NHS to take advantage of the enormous advances in medical genetics that will come about. One of the keys to 152 success in this area will be more and better education for all doctors, especially GPs, for nurses, for genetic counsellors and for a range of other healthcare workers and above all for the public. Is my noble friend aware of how much the report's emphasis on education is welcomed by everyone involved?
§ Lord WarnerMy Lords, I want to put on record the Government's appreciation for the work undertaken by the noble Lord in chairing the advisory panel that contributed so much to the White Paper and for his support in this area. He is right that we need to work hard to put in place the training, to give people working in the NHS the confidence to grapple with the new agenda and to feel competent and confident about handling the issues.
§ Lord Maclennan of RogartMy Lords, will the Minister say how the Government intend to ensure that genetics knowledge is not concealed by those who seek commercially to exploit it from those who may further advance medical research by its use on the spurious grounds of seeking to protect intellectual property? That concern has been expressed at senior levels in the scientific community, not so much about practices in this country as in the United States. Will he and the Government engage in discussions internationally about ensuring the continuing availability of such genetics knowledge?
§ Lord WarnerMy Lords, that is an issue, but it is important to remember that patents provide an incentive to innovation. Without them industry and other inventors would be less likely to undertake some significant risks involved in investment and research to bring new healthcare products to market. There is a balance to be struck. There are safeguards in the patent system—many noble Lords will know about that in the area of Crown use—which enable the NHS to use patented inventions for an appropriate fee if the patent holder is unwilling to agree a reasonable deal. There are safeguards in the provision. The noble Lord is right to identify that as an issue, but equally there are strong protections for the Government to enable knowledge to be used for the benefits of patients in the NHS.
§ Baroness Carnegy of LourMy Lords, as a previous chairman of a local research ethics committee, I would like to make a serious point. The Statement began, presumably to warm the cockles of the hearts of some of the Members of Parliament sitting behind his right honourable friend in another place, with a highly political point about the NHS. It went on to be serious about what the Government are going to do, and I welcome everything that was said.
I suggest to the noble Lord, and through him his right honourable friends, that it seems important to concentrate, in trying to persuade the public—considering all the policy issues involved—to keep clear of controversial politics. This should be talked about as a scientific matter and as a matter of public policy in a way that everyone can accept and 153 understand. It should not be linked to what we now call political spinning. If that is attempted, it will put people off the whole notion.
The Government are entering a minefield of difficulty both in policy and in creating public understanding. I am sure that if they could avoid party politics, and stick to the science, they would get on much better. It is a serious point, as I experienced at local level some years ago.
§ Lord WarnerMy Lords, I am always willing to act as a conduit between this House and my right honourable friend the Secretary of State for Health. I shall of course do so in this case. It is worth bearing in mind that my noble friend was trying to make the point that people are often concerned about these issues and whether they will be left behind. It is important to stress that the characteristics of the NHS provide reassurances that there will not be a genetic underclass as we take forward this exciting but still difficult and complex area of development in healthcare and medicine.
§ Lord Soulsby of Swaffham PriorMy Lords, I am sure that the whole House will be glad of this positive government statement. It coincides with tile celebration of 50 years of DNA at the Wellcome Trust Sanger Institute next week. It is a good time to make the announcement. It is a good announcement among the many negative comments that one hears 'about genetic research. I hope that the Statement will put to flight many of the people who speak against it. I hope that the Minister will adumbrate further statements on behalf of Her Majesty's Government for support of genetic research and the use of genetics in medical treatment and development.
Perhaps this is not the most appropriate question for the Minister, given the medical side. Is this an indication of the Government's general support of an intention to foster genetic research in general across medicine, agriculture and horticulture, where so many of us appreciate the great value of genetic knowledge and the application of this knowledge across the whole field of life on earth?
§ Lord WarnerMy Lords, I thank the noble Lord for his support in this area. I do not want to stray into agriculture and horticulture, but noble Lords can assume from what we have said today that the Government fully support taking the benefits of genetic knowledge as far as possible in the interests of patients through medicine.