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Sir Giles Shaw (Pudsey): I am sure that the hon. Member for East Kilbride (Mr. Ingram) would not expect me to follow him precisely.
I apologise to my hon. Friend the Minister and the hon. Member for East Kilbride but, unfortunately, owing to commitments in my constituency, I may be unable to stay for the wind-up to the debate.
Hon. Members are aware that this is the first time that we have had an opportunity to debate the Select Committee's report on human genetics. It does not surprise me that that has formed a major part of the speech of the hon. Member for East Kilbride and, in large measure, I welcome what he had to say.
The scientific excitement of genetic research and its implications for human health were beginning to attract attention when we set out on this research a considerable time ago. But the implications of the science go far wider than health care. They can touch virtually every part of our everyday life. Until recently, genetics was thought of as a fairly rare science dealing with fairly rare diseases, but today medical science has brought commonplace diseases within the remit of genetic identification. Hon. Members have already referred to Alzheimer's disease and diabetes.
When the Committee began its inquiry, we were under the conviction that this was a major international scientific exercise that brought together the talents of many researchers all over the world into mapping the human genome. But it rapidly became clear to the Committee that the mapping process accelerated by computerisation and intensive effort was becoming an achievement that would take not the decades originally expected but only a few more years to accomplish. I pay tribute to the scientists and technicians who worked all over the world and were able to accelerate the project beyond its founders' wildest expectations. It was an amazing scientific achievement for which we must all be extremely grateful.
Nevertheless, with the speed of the development and the extent of public interest in it came the question: how fast can therapeutic development carry out what the scientists had provided in genetics? The Committee became involved with international competition between major drug companies, with questions of patenting and what should be deemed appropriate to offer protection to developers of therapies.
I remind the hon. Member for East Kilbride that the Committee arrived at a definition for patenting and published it in its report. It says that
We also became involved in the question of insurance and the consequences of using those therapies and diagnostics. It would not be too dramatic to say that most of mankind in the major western countries, and many beyond in due course, will become exposed to the impact of human genetics and a range of consequences, some of which are beneficial while others are less so.
Within that range of consequences are the ethical issues. The hon. Member for Liverpool, Mossley Hill (Mr. Alton) is extremely exercised on that matter. The ability to identify a gene linked with a particular disease may come years before treatments for that disease are improved, and many questions are then raised. What use can or should be made of genetic information in those circumstances? Should family members who might also be at risk be told? Should insurers have a right to the information? Should it be protected by privacy legislation to ensure that it does not lead to newspaper stories shrieking, "Popular hero has gay gene"? How can the public be educated to deal with genetic information which may not be "good" or "bad" and which is likely to be expressed in terms of probability rather than certainty? Is it legitimate to collect information on genetic differences between different groups?
The Committee had something to say about and to learn from all those questions. Indeed, that matrix persuaded the Committee that there could be no sensible public policy on that area of genetic science and its development unless it was comprehensive. This was not just a matter of the science of genetics, nor just a matter of the provision of medical therapy--it was a matter of public education and awareness, and a sensitive application of genetic testing with the proper counselling that would enable both the receiver of the data and his or her family, if appropriate, to be made fully aware of the consequences of the test and the limits of the test before it was carried out. Genetic knowledge can raise false hopes and unfounded fears, and patients need a fair assessment of their individual situation.
Mr. Alton:
The hon. Gentleman is providing the House with an intelligent list of the dilemmas that we shall face as a society if genetic testing proceeds. Will he confirm that, so far, gene therapy has led to no cures and that a person faced with the information that he has just described inevitably has only the so-called choice of allowing a developing child to proceed with its life or to destroy that life?
Sir Giles Shaw:
I appreciate the hon. Gentleman's views on the matter and I understand his question. I do not think that I am well enough equipped to answer his
Dr. Lynne Jones:
Although gene therapy is in its early stages of development, I should like to correct the impression that may have been given by the hon. Member for Liverpool, Mossley Hill (Mr. Alton) that there has been no progress in gene therapy. For example, there is evidence that gene therapy can have beneficial effects for cystic fibrosis. The point of the debate this morning is to discuss the tremendously exciting prospects that are in this science for curing illnesses and for improving the health and well-being of humankind.
Sir Giles Shaw:
The hon. Lady is quite right on these matters, and I am glad to have had her correction on this issue.
The Committee's report pays full attention to the issues of patenting and the law and, to some extent, to the issues of insurance and employment. I thank my hon. Friend the Minister for reminding us that the insurance industry has taken its first hesitant step to address the Committee's rubric on this matter, but there is no doubt that it will have to move considerably further before it provides the framework within which these issues can be properly handled.
The main theme of the Committee's report was that it is essential to provide a source of advice to the Government that is comprehensive in its scope. Therefore, it was intended for the Government to be better advised in health and in those aspects affecting employment, industry, patent law, insurance, and the sensitive monitoring and assessment of genetic testing. The Committee recommended the establishment of a Human Genetics Advisory Commission, which should seek to assure or to reassure the public that the wider social implications of this developing field of therapy are not being overlooked. Obviously, the Committee and I welcome the Advisory Committee on Genetic Testing, the membership of which the Government have recently announced. I would also welcome the Government's announcement of the membership of the Human Genetics Advisory Commission--that decision must not be delayed.
Genetic science has to be developed and used in a way that will carry public confidence. To some extent, we were influenced by the way in which the Government had handled the development of in vitro fertilisation. This stemmed from a thorough inquiry and resulted in the Human Fertilisation and Embryology Authority, which was set up by statute to oversee the application of these particular therapies in a way that has commanded widespread public confidence. We believed that this problem was urgent because tales of square tomatoes and genetically induced monsters began to plague the public press.
Mrs. Lait:
I am pleased that my hon. Friend has raised the development of the advisory committee on embryology. It was preceded by a committee chaired by Lady Mary Donaldson, which she set up on a voluntary basis. The committee created the framework for the
Sir Giles Shaw:
I hope that in due course the Government will find this so useful and essential that they will make it a statutory arm of government, as happened in relation to the embryology authority. We urge that as the ultimate correct solution.
When the Government responded to the Committee's initial report, they rejected the idea of an overarching commission, but they agreed that there should be a genetic testing advisory committee, to which I have already referred. Until the advisory committee was established, there was nothing to prevent anyone from offering genetic tests to the public--without counselling, without consideration of whether the test was desirable and without any associated scrutiny of laboratory standards.
One company had already begun to offer postal tests for cystic fibrosis to determine whether a person had carrier status. We know nothing against the company, but it is arguable that genetic tests by post are undesirable, since counselling standards are likely to be low. We do not know whether it is profitable, but less scrupulous operators might be tempted to follow that practice. We hope that the advisory committee will look at these issues straight away and rationalise this matter.
Useful as the advisory committee is, it does not have the breadth of responsibility necessary to ensure the intelligent and responsible application of genetic science, or to reassure the public that genetics will not make monsters. Somewhat unusually, the Committee refused to accept this as the last word on the matter and it began a short inquiry to try to persuade the Department of Health and the Office of Science and Technology to reopen the issue of a broad-based commission.
I believe that it is to the immense credit of my hon. Friend the Minister for Science and Technology and of my right hon. Friend the Secretary of State for Health that, after a further round of probing from the Committee, of evidence taking and of persuasive effort, they changed their minds on this fundamental point. I say to the hon. Member for East Kilbride that I do not regard that as a U-turn; I regard it as a persuasion of a Committee dedicated to achieve a certain purpose--it was well organised, well led, and well supported, and it achieved what it set out to do. I congratulate both Ministers on their courage and on the confidence that they showed in the arguments that were put forward. The debate allows me to pay tribute to the Ministers and also to the Committee, which recorded this achievement, aided by a quite outstanding service from its Clerks and assistants.
We look forward to the establishment of the commission, and I am confident that a statutory solution will ultimately be found. In arguing for a commission, one inevitably lists the abuses that it will guard against. These abuses could happen, but the potential benefits of genetic science are huge and should be welcomed by all hon. Members without reserve. The greatest danger to the use of genetic knowledge is public fear, and that is best allayed by the knowledge that potential abuses are likely to be identified and, therefore, more likely to be prevented. The advisory commission could and, in our view, should play a key role in ensuring that we can use to the full the immense potential for good that this scientific knowledge offers.
I refer to the second research report that has come before the House and that is relevant to the debate. I refer to our inquiry into the Particle Physics and Astronomy Research Council. This year, the Committee decided to undertake the first of its inquiries into the activities of research councils. We had at the back of our mind the duty to follow the progress of the Office of Science and Technology and its policies through all its major expenditures in public science.
We chose the Particle Physics and Astronomy Research Council for our first inquiry. The council has the responsibility for managing the United Kingdom's commitment to a great international collaborative research effort--namely, the development of the large hadron collider at the European Centre for Nuclear Research, or CERN. CERN comprises representatives of the 18 European Governments that pledged their financial resources to this particular endeavour, which is to explore the fundamental particles from which all matter is made. That attracts some popular interest, although it clearly has less application in the immediate future than the mapping of the human genome. It is far and away the biggest single scientific project that any of our research councils are required to manage. Owing to the international treaty under which it operates and the fluctuations in the currency--Swiss francs--in which subscriptions must be paid, it has a huge impact upon the financing of the research council's budget and creates a major distortion in the fields of astronomy and space science for which the council is equally responsible.
Although the PPARC will certainly have the money to pay its share of the building costs for the large hadron collider according to current projections, it will not have the money to fund the experiments that will run on the machine when it is completed. One member of the council told us that it was like becoming a member of an expensive health club only to find that one could not afford to rent a court to play squash or even to buy a drink at the bar. Therefore, our report concentrates on how that distortion can be reduced.
Over the past three years, Science Ministers have been concerned about the question of what resources should be allocated to that large experiment. However, the Committee believes that they must now make a decision. The large hadron collider has been agreed, and development work had already begun when we visited CERN. The Committee applauds the concept of international collaboration on major scientific research and co-operation on research projects such as this. However, it does not seem reasonable that the Government's science budget, in part or in whole, should bear the considerable costs caused by fluctuations in international subscriptions that have nothing to do with the scale of the scientific programme involved.
"--only a combination of a gene and a known utility which is novel and not obvious should be patentable in the context of that utility; and
If the European directive allows that process as defined to continue, I am sure that the Committee will accept that. The hon. Member for East Kilbride was right to say that we need an international framework to enable that process of patenting to continue.
--a combination of the same gene and a further novel utility should also be patentable."
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