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Dr. Lynne Jones: I hope that members of the public will read the Hansard report of the debate today, including the contribution of my hon. Friend the Member for Motherwell, South (Dr. Bray). However, I hope that the hon. Gentleman will also commend to members of the public the report of the Select Committee on this matter, which the majority of its members were fully behind. The report shows that the process on which my hon. Friend suggests that we embark has already taken place. That is apparent from the letter from the former Chancellor of the Duchy of Lancaster, which is printed in the report. The Committee report was agreed on the same day as the House voted to increase the salaries of Members of Parliament and Ministers at a cost of about £6 million. That is a far greater liability for the taxpayer than our report's proposals regarding the PPARC.
Mr. Hughes: The hon. Lady's final point is rather fanciful.
Mr. Hughes: I voted the same way as most of the shadow Cabinet. That point is rather fanciful when one considers the financing of CERN. Whether the Select Committee is right or wrong, having played some part in negotiating the basis and funding of the large hadron collider, the hon. Member for Motherwell, South talks enormous common sense. Whatever the Select Committee may think, and despite the evidence that it received, I believe that the project will be in danger of collapse if the PPARC does not follow the hon. Gentleman's line. Most Governments who have made major contributions to the project would follow the same reasoning. That is an important point. I am sorry that the hon. Member for Motherwell, South is only now entering the Chamber, after I have praised him to the skies. He will be missed in future debates.
Mrs. Anne Campbell (Cambridge): I begin by declaring my registered interest as a non-executive director of the Welding institute, which is a technology transfer organisation.
Today I shall concentrate mainly on the subject of human genetics. Other hon. Members have touched upon many of the issues that I intended to raise, but there is no doubt that genetics is a big subject and that advances in that field will affect all our lives.
We shall be able to identify not only genes carrying diseases to which we have a predisposition, such as Huntingdon's disease, sickle cell anaemia or cystic fibrosis, but diseases to which we are susceptible. We shall be able to make better-informed choices about our life styles, knowing whether we are likely to suffer from heart disease, cancer or arthritis in later life. As we know our genetic make-up and that of our partners, we shall be able to assess the risks for our children.
The debate has illustrated the fact that the identification of genes and the knowledge of what they do sometimes present hard, new moral choices. I strongly believe that a woman who is carrying a child with a known genetic abnormality should be able to have the foetus aborted if she wishes. However, it is also very important that a newly pregnant woman who is offered a test realises at the outset that, if the test is positive, she will have to make an often uncomfortable decision about whether to opt for an abortion.
I know that many women who are offered amniocentesis tests are not told beforehand that, if they are found to be carrying a Down's syndrome child or a baby with another known abnormality, the only treatment that modern medicine can provide at present is an abortion. I am arguing for a woman's right to choose, but I believe that that choice should be as informed as possible. That is not a cheap option, because it means that anyone who is offered a test must also be given counselling. As more genes are identified with specific diseases, more tests will become available and counselling and advice will become more important.
The requirement must also apply to the commercial sector. It has already been mentioned that a company called University Diagnostics is offering genetic tests through the post to identify carriers of the cystic fibrosis gene. I believe that that company is reputable and it offers counselling and to send the results to the family doctor, but the law should be strengthened in that area and no company should be able to offer such a test without mandatory counselling, not only after the test but before.
The advice that is given must be impartial. I know that when the Select Committee considered the issue, great concern was expressed that hard-pressed NHS managers, trying to balance a budget, might be tempted to persuade women carrying children with disabling diseases such as cystic fibrosis to have their babies aborted. The temptation would exist because disabilities are expensive and the symptoms are not only distressing for the child and its parents, but time-consuming and difficult to alleviate. The manager of a health authority that had no such patients might find his or her budget stretching more easily. It is essential that women are able to make informed choices without pressures of any kind and I hope that the new Advisory Committee on Genetic Testing, ably led by Professor Polkinghorne--who is, incidentally, one of my constituents--will examine that issue at an early stage.
The new genetics will not only tell us what diseases we shall get, but those that we would do well to avoid. When we can identify individuals who are susceptible to heart disease or cancer, they can be given much better medical
advice about their life styles. Diet, exercise and avoidance of stress are more important to some individuals than to others. It is desirable that, once the tests become available, people should be persuaded to have them done, but if the information gained is used to discriminate against them at any stage, people might be unwilling to undergo the tests. The Government have introduced new insurance schemes, and the recent leaked letter from the kids in the Treasury suggests that that might be one of the ways in which they will try to reduce expenditure on the welfare state.
The new emphasis on private insurance to replace the welfare state poses many threats to susceptible individuals. At present, there is a consensus among insurers in the UK not to ask individuals to take genetic tests, and that has been confirmed by the most recent letter from the Association of British Insurers. However, they also demand that if an individual has had such a test, they are told the results. That demand has certain consequences. For example, if I had to disclose to an insurance company that I carried the breast cancer gene--I hope I do not, but I might--that would mean that any premiums for life insurance or mortgage insurance would be heavily weighted against me. That would make it much less likely that I would want to take the test, but my doctor would prefer to know and would want me to know that I was susceptible so that I could take preventive action.
The insurance companies' policy is against the population's interest as a whole. I can understand the reason behind the policy--the companies justify their behaviour through what they call adverse selection. They argue that if people know that they have a high risk of succumbing to a disease, they are more likely to insure themselves against such a calamity. The insurance companies say that they want to know everything that we know, which sounds reasonable, but is not conducive to sensible behaviour by the population at large. The Select Committee felt that that was an urgent problem, and our report suggests that the insurance companies should be given a year to solve the problem with consumer interest groups, such as the excellent Genetics Interest Group, which has been mentioned already today. We presented a possible solution and drew attention to the threat that a solution might be imposed if the groups did not manage to reach agreement.
I understand that talks were taking place and good progress was being made until the Government published their first response to our report, which said in paragraph 101:
In the Government's response to our second report, they said that contact with the Association of British Insurers had been maintained and that it was understood that an announcement could be expected shortly. I know that the Minister is trying to maintain pressure on the ABI, but far greater pressure may have to be exerted. Too many people who are already disadvantaged because of their genetic predisposition are suffering discrimination, and it will rapidly worsen as more scientific discoveries are made.
Not only insurance companies are discriminatory. Employers are guilty on occasions. If an employer discovers that one of his or her employees is suffering from a predisposition to a disease that may involve long periods off work, we must ask what the employee's rights are. I certainly find it alarming that another person, possibly my employer, could find out about my genetic make-up just by taking a hair off my shoulder and testing it for various genetic diseases. I find it even more alarming that someone might act on that information against my interest.
The Genetics Interest Group has pointed out that the combination of the Disability Discrimination Act 1995 and the lack of regulation of the non-medical uses of genetic information might encourage discrimination. Under the terms of the Act, employers are under an obligation to make allowance for the special needs of disabled employees, which we all support. However, given that that is so, an unscrupulous employer might try to ensure that such obligations did not fall on him by refusing employment to presymptomatic individuals--those who will or might develop a genetic condition.
It is a pity, therefore, that the Government seem determined to refuse to extend protection to presymptomatic individuals in the same way that protection has been extended to people with disabilities. The Genetics Interest Group has expressed its disappointment at the Government's lack of action on that set of issues. During the passage of the Disability Discrimination Bill, the Government said that the concerns would be addressed by their response to the Science and Technology Committee inquiry. They have blatantly failed to do that. In fact, their response to the Committee's suggestions on employment was totally inadequate. They suggested that employers might be encouraged to draw up a code of conduct. In other words, employers could do whatever they liked.
It is surely of fundamental importance that genetic information should belong only to individuals and their families. It should be a criminal offence to use genetic information without an individual's consent. Employers should not be allowed to demand that employees consent to a genetic test as a condition of employment, with, of course, certain exclusions that we all understand, where it is important for the health and safety of employees or customers of the company.
It has already been mentioned that we could create a society in which people are disadvantaged by their genes. Unless we take steps now and put proper protection in place, we could finish up with a genetic underclass. That underclass will be unable to take out life, health or mortgage insurance, which probably means that its members will not be able to buy a house. They may be unable to find employment, and may even be considered too expensive for a doctor to take on as a patient, so they may be denied medical help, too. Surely, instead of discriminating against people in that way, we should celebrate human diversity and do everything that we can to bring about social cohesion by including people in the general run of life.
I am glad that the Government have had second thoughts about the Human Genetics Advisory Commission, as there are many serious issues to consider that cannot be adequately tackled by the multitude of groups that they had already set up.
The speech by the hon. Member for Liverpool, Mossley Hill (Mr. Alton) illustrated well why such a commission is necessary. That speech was emotive and expressed a certain point of view--one that is not, I am pleased to say, shared by the population as a whole. The fears and prejudices that the hon. Gentleman expressed were those that I hope the commission will work hard to dispel.
I hope that the commission will work within a statutory framework to set regulation, to license commercial companies and groups within the national health service that offer genetic tests and therapies, and to consider in depth some of the difficult problems that the debate can treat only superficially.
So far, I have dealt with issues that are arising now. We are at an interim stage, in which we can identify gene sequences and are beginning to find out the effects that some of them have. We can already develop tests for some of the common genetic disorders. The next step will take us on to a much more beneficial phase, when we shall be able to use genetic therapies to cure the diseases themselves. Until now, the pharmaceutical industry has often provided us with medicines that treat the symptoms rather than the diseases. Gene therapists, however, offer us the exciting possibilities of making changes to the genes that will cure the diseases altogether.
When the Select Committee visited the United States, we were shown examples of research that had been done to reduce cancerous brain tumours untreatable by other methods. We know that there is a genetic therapy available for cystic fibrosis, and others will quickly follow. Pharmaceutical companies are investing millions of pounds in those areas of research, and those advances represent real progress for the human race.
SmithKline Beecham sent us a brief for the debate, which pointed out that in the United States £60 billion a year is spent on the care and treatment of people with Alzheimer's disease. If we could find a genetic therapy for that disease, it would not only relieve much personal misery, but enable many people to lead productive lives for much longer--and, of course, save a huge amount of money for the national health service. That investment would be money well spent.
The exploitation of intellectual property rights needs to take place within the correct regulatory framework. That framework must give protection to industrialists who wish to exploit their ideas and inventions commercially, without being undercut by a competitor who has not spent the resources on research. The regulations must be strictly defined for that purpose, but when we draw rings round the patent, they must not be drawn so widely as to exclude others who wish to research in related but different areas.
My hon. Friend the Member for East Kilbride (Mr. Ingram) has recently spent a great deal of time studying the European directive, and because I felt that it was safe in his capable hands, I have not examined it in detail. There have been discussions in the European Parliament, the United States and elsewhere about the ethics of patenting life.
We must tread carefully in that area, because the issues are so sensitive, but we must take note of what the industrial and commercial companies say about their need
to protect their intellectual property. It is a question of getting the balance right, and the Select Committee's suggestion provides the right balance. I hope that the European directive will meet the conditions that we set.
I would like to mention the human genome project, a major international collaboration that I am pleased is progressing smoothly. Like many others, I was alarmed when some American scientists got the idea that genetic codes might one day be valuable, and so began to take out patent applications to try to make money out of them. It was decided that it was not legal to patent a gene that did not have a known utility, and the patent applications were dropped.
We then saw the ingenuity of companies such as Human Genome Sciences, which tried to make its database of genetic sequences available to researchers on the basis that if a researcher uncovered a utility, the company would be given first refusal to exploit it. That practice, I am glad to say, met with strong disapproval from other pharmaceutical companies, and another company decided to make its gene database completely open without any precondition. That seems to have put paid to Human Genome Sciences' idea, and we are all pleased about that.
I hope that the European directive will do as the Committee suggested. We felt that a new genetic test or therapy should be patentable, as that is the only way in which commercial companies could protect their investments in research. The gene sequence on which the research was based would also be part of that patent. However, we also felt that another company--or the same company developing a different test or therapy based on the same gene sequence--should also be able to take out a patent without having to pay a licence fee to the first company. I very much hope that our colleagues in the European Parliament will consider our solution to the problem to be correct, as it offers the best opportunity to derive the maximum benefit from the new genetics.
Others have spoken about the Particle Physics and Astronomy Research Council inquiry, but I do not propose to do so. I wanted to concentrate first on human genetics and secondly on science policy. The difficulty that we are all facing today is that this is such a wide-ranging debate and it is perhaps becoming a little fragmented. When the White Paper "Realising our Potential" was published, I was a little sceptical about some of its aspects. But I welcomed it as the first step for many years by the Government to try to put a structural framework around our science policy. That was lacking, and I believe that a previous Chancellor of the Duchy of Lancaster has paid tribute to my hon. Friend the Member for Motherwell, South (Dr. Bray), whose ideas expressed in our manifesto at the previous election led to many of the reforms that have been introduced by the Government since then. I also welcome technology foresight.
Despite the Minister's encouraging words about all the good things that are happening, the science budget is under pressure from all quarters. It is worth pointing out that the OST is responsible for only £1.1 billion out of a total annual budget within the Government of £5.7 billion. It is therefore impossible for us to ignore the pressures on the budget.
Other hon. Members have mentioned that university funding for science--not only through the research councils, but through the higher education funding
councils--is suffering badly. That funding provides the basic infrastructure for scientific research in universities, and it is used also to pay for overheads for specific research projects. Over a three-year period, those overheads have been transferred to the research councils. But what has happened to the HEFCs' budgets is catastrophic in terms of the proposed cuts in capital expenditure of about 50 per cent. over three years, and cuts in funding per student. That funding has been cut by one third in the past 10 years, according to figures produced by the Association of University Teachers.
What is the reaction of industrialists? SmithKline Beecham has said that too little is spent on science funding and that there is a lack of trained personnel in the United Kingdom. The company also said that the pharmaceutical industry finds it difficult to recruit research and development candidates in the United Kingdom who are well trained on modern equipment. Surely that is symptomatic of the fact that the modern equipment is not available in university research laboratories.
I am cynical enough to believe that the sole purpose of the prior options review was to reduce spending. The statistics in the forward look show that the Government's total spend has come down from £6.4 billion to £5.3 billion a year in the 12 years between 1985-86 to 1997-98. The prior options review is a way of reducing expenditure by privatisation--selling off research laboratories--and has nothing to do with preserving the quality of the science that the institutes produce.
On industrial and commercial spending on research and development, from the recently published research and development scoreboard, we can see that United Kingdom firms are doing badly compared with our international competitors. The New Scientist had a headline, "Britain slides down the R and D league table". The magazine showed that the top 300 companies in the world ploughed back 4.4 per cent. of sales revenue into research and development. The 18 British companies mentioned averaged only 2.5 per cent., which was well below the general average, and only Glaxo was in the top 50 in the global league table. That is surprising and worrying in view of the fact that British companies have increased their profits in the past year or so. One would expect that if they had the right attitude and policy towards research and development, some of that increase in profits would have gone into research spending and not into the shareholders' pockets.
"The Government does not agree with the Committee that the deadline should be imposed on the insurance industry for the development of an acceptable solution on the use of genetic information for insurance purposes."
It all seems to have gone very quiet since then, with the exception of the letter that was most recently published, which told us nothing new at all. It contained precisely what the insurance companies said when they gave evidence to the Committee well over a year ago.
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