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Medical Research

My Lords, I am delighted that my noble friend Lady Hayman has managed to secure this debate. She introduced it with her characteristic intelligence and flair. I also say how much I appreciated the maiden speech of the noble Baroness, Lady Fritchie, which demonstrated enormous experience and knowledge and bodes very well for the future. I declare my interests as scientific adviser to the Association of Medical Research Charities, as a fellow of the Academy of Medical Sciences, and as an ex-medical researcher. I say at the outset that despite the problems that may beset research in the UK, we do pretty well by any standards. We rank second only to the USA in any measure of medical research output. It has recently been demonstrated by Sir David King in an OST report of 2004 that we are way ahead of all other G8 countries. If you look at the amount of research that we get out per pound input, we are top; we do pretty well with Nobel prizes in medicine too. We have a Government who are clearly supportive of medical research, with a whole series of funding initiatives, and we have a strong voluntary sector with medical research charities putting in £3.25 billion in the past five years. It is increasingly clear that we are gaining enormously from all this investment in terms of an increase in healthy lifespan. We are gaining two years’ extension of life in every 10; that is, a child born today will live two years longer than one born 10 years ago. We are gaining about 30 minutes during the course of this debate. Half of that is due to advances in medical care. That gain is reflected in economic benefits arising from increased productivity. Recent calculations by the LSE show that, as in the USA, we gain £5 for every £1 put into medical research. A 5:1 return on investment must be music to the ears of the Minister. With all that good news, it came as a surprise to hear that the Chancellor of the Exchequer, who is no slouch in reporting medical research and other research—he is excellent in that—surprised us by proposing to amalgamate the funding of the MRC and the NHS R&D budgets. But the unintended consequences of such a move may be considerable and, like the noble Baroness, Lady Fritchie, I have some concerns. The danger lies in the potential distortion of the balance between basic and applied research, away from the science base which is providing rich dividends, towards the applied, where there is a distinct possibility of its diffusion into NHS service—just as the NHS R&D funding is diffused into service, rather than into R&D. I hope that the Minister can provide us with some reassurance on all of that. Of course we are fortunate that Sir David Cooksey is overseeing this amalgamation, but he will need to pursue a delicate balancing act if he is to achieve a potentiation of research, rather than a damaging outcome. I turn now to another problem that poses a threat to epidemiological research, which relies on information about patient data. Perhaps I may give an example. There was a suggestion that Gulf War syndrome patients were more likely to get cancer than others. It was only by an examination that compared the clinical records of thousands of Gulf War victims and other veterans that it was possible to show that there was no increased incidence. Similarly, only large-scale studies of the case records of thousands of children proved that MMR vaccination did not cause autism. I believe that everyone—the public, patients and researchers—have a common interest in wanting such research to be carried out in an efficient and careful way, so that patients’ confidentiality is preserved and that they will not be harmed or embarrassed by it. But now there has grown up an extremely complicated patchwork of UK and EU legislation—including the Data Protection Act, the common law on confidentiality, the Patient Information Advisory Group, Caldicott Guardians and the GMC—all of which require satisfaction; that is only a partial list. It is no wonder that researchers and ethic committees are confused and err towards preventing, rather than encouraging, research. Yet in most instances it is the interpretation of the law, rather than what the law allows or prohibits, that is the problem. That is because the law as it stands allows such research to be undertaken without consent, provided that such use is necessary and proportionate, respecting privacy and public interest benefit. A reasonable and rational balance can be struck. All this is spelt out in an excellent publication from the Academy of Medical Sciences, to which the noble Baroness, Lady Hayman, referred,entitled Personal data for public good. It gives clear guidance on what can and should be done to inform and engage the public, to help ethics committees and researchers about what is allowable and what is not, and to ensure that a reasonable balance is struck between protecting individuals’ rights and confidentiality and the public’s need for research. I hope that the Minister will take note of those recommendations. Unfortunately, I suspect that this matter is not in his department’s responsibility; but, perhaps, he can pass on the message to the Department of Health, in whose court it may be.