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Does the Minister agree that we must not become paranoid about safety and action against terrorism? Given that the Royal Family wish to keep in touch with the people of this country, if we separate them so much from the population, if we become so paranoid that we frighten ourselves almost to death, we will be doing the terrorists' work for them. Please could we handle the problem with a degree of decorum and not let the matter become out of hand?
Lord Mackie of Benshie: My Lords, my noble friend the Minister said that we should all be vigilant. Indeed, I sometimes see extraordinarily peculiar people in this Housebut when I investigate they always turn out to be Peers.
Lord Swinfen: My Lords, could the Government arrange for our special forces to test the security at royal palaces, and then give a report to the security officials as to how they succeeded in getting in?
Lord Monson: My Lords, does the Minister agree that if our public figures, heaven forbid, behaved like eastern European, Latin American or Third World dictators and surrounded their houses and palaces with barbed wire, watchtowers and 24-hour floodlighting, after felling all the trees surrounding their palaces, then such incidents would be unlikely to occurbut at what a terrible cost? In a free country, a certain degree of risk is inevitable.
Baroness Scotland of Asthal: My Lords, it is a matter of balance. We are taking a balanced approach. We shall be able to put in place any additional measures, and I can assure noble Lords that we will show the usual British courage and flair.
"Today's White Paper could not be published at a more appropriate time.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
"In time we should be able to assess the risk an individual has of developing the country's biggest killerscancer and coronary heart diseaseas 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 but 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 strategya 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 basedproviding care for all free at the point of use on the basis of need, not the ability to payare 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
"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
"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.
Earl Howe: My 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 benefitsnot least in the field of genetics and other biological research in which public understanding lags behind that of the specialistsat
I agree with the Government that transparency and openness are essential elements of the public debate. Without such openness, misinformation and anti-scientific 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 researchespecially for research into cystic fibrosis and pharmacogeneticsand 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.
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 scienceat a pace commensurate with its actual progress.
Lord Clement-Jones: My 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 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 thatat the very leastthat 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 that is to be done, but are concerned at the proportion of the MRC's funding devoted to it. I hope that the project can proceedbut without crippling the MRC's capacity in other fields.
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.
Lord Warner: My 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.
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.
Lord Jenkin of Roding: My Lords, perhaps I may draw the Minister's attentionif that has not happened alreadyto 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 Statementit may be in the White Paper but I have not had time to study thatis 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 riskI put it no higher than thatof 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.
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