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11 Jan 2000 : Column 38WH

Human Genome Project

12.28 pm

Dr. Ian Gibson (Norwich, North): It is my view that the human genome research project will transform medical practice in the next 10 to 20 years. The nature of the changes will be dependent on those working in health care delivery and on the public's reception of the new health technologies. Hon. Members recognise that of course the future of health care is linked not only to research but to the future and functions of the national health service, with its on-going ethical and public debates.

The human genome project is being carried out at five main centres, one of which is the Sanger institute in Cambridge. In the next two or three years, the project will lay bare the total genomic information, which is the sequence of DNA written in an alphabet of four letters throughout our 24 pairs of chromosomes. That feat may be compared with unravelling the sequence of words, letter by letter, of 200 volumes of Hansard: the equivalent of two Parliaments' worth. There will be redundancy in both programmes: there will be many DNA sequences of whose function we will be ignorant, but that is also true of some of the words in Hansard.

DNA sequencing involves new technologies and partnerships across the world--naturally, there are arguments between scientists and boffins--and round-the-clock working using high technology. The results of that have been described as revoluntionary by scientists around the world and its implications equated with the discovery of the wheel. As DNA defines much of what we are, it promises to open up new vistas of understanding and activity in the pharmaceutical industry and health services. It will, for example, open up the possibility of molecular diagnosis of known genetic diseases, such as cancer, Alzheimer's and arthritis. No doubt, genes for other diseases will be discovered in the next few years.

That will be a huge advance, as we shall be able to target drug therapies on an individual's specific molecular genetic defect. Drug design will be specific for each molecular fault, which will be a major change in approach to the treatment of diseases with multiple molecular causes, such as childhood leukaemias, which may have 15 different genetic clauses. There will be sub-classes of patients and potential patients who may be treated as a sub-population. We will be able to target individual populations, with a drug unique to their specific molecular aberration. That drug will be an effective, rational treatment, in contrast to the irrational sledgehammer treatments in medicine today, which have attendant side effects.

A microchip containing people's molecular disease profile will be available to them, should they require it. Those who are clinically normal will be able to predict illnesses to which they are clinically predisposed. Growing knowledge of genetic and environmental interactions, such as the effect of smoking on health and whether people have the gene for lung cancer, will allow people to say, "I'd better not smoke, as I have the gene for lung cancer. People will have such knowledge long before a lung cancer develops.

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Other examples of environmental pressures are bad housing and the quality of diet, which affect social groups unequally. There are social class differences in being subjected to different sorts of environment. Preventive measures and the effects of environmental factors will feature much more prominently, as they will interact with genetic knowledge. Health is not isolated from the circumstances or environment in which people live.

The human genome project and the information generated by it will herald a health service in which patients are more knowledgeable. Combined with advances in telecommunications--with the internet, websites and so on--that will force on us another aspect of health care delivery. Doctors will have to be trained to cope with patient demands and new knowledge, and will be required to interact with other health service groups in order to translate such knowledge into treatments. Regional counselling services will not be competent to meet that large demand and more locally organised services will be needed, perhaps on a city-by-city basis. The James Justice Robertson model--I do not know whether that is the right way round, or whether it should be James Robertson Justice, as I am from the wrong side of the tracks and unused to doub-barrelled names--will become a thing of the past.

Teaching and training in genetics and counselling will be the consequences of the human genome project and will have to be on the medical curriculum. Continued learning by the same cohort of medical students will be essential as we learn how gene products interact and understand further intricacies of multiple gene interactions, for example in brain disease and even IQ. More understanding and less pontification should be the hallmark of the new doctor, and partnership between the higher education sector and the health sector should become the order of the day. New doctors for the new millennium, some might say.

A result of the human genome project will almost certainly be to reveal the closeness between DNA sequences or genes among certain organisms, which will be uncomfortable for many of us. The small DNA changes required to shift from ape to man will revise the debate between Church and science. We are already witnessing that in Kansas, where anti-evolutionary forces now operate in the education sector.

On the darker side of the revolution, however, are the activities of Celera Genomics, a private laboratory in the United States, which is hellbent on patenting every part of the human genome, thereby preventing free public access to important information for health care. Other companies are marketing their genetic markers for, for example, breast cancer. They sell them at astronomical prices and hide behind their patent protections. There must be some presidential and prime ministerial intervention at a high level to ensure that the behaviour of multinational companies, which are capitalist buccaneers, does not usurp such a large step forward for mankind. If J. Craig Venter is allowed to get away with his project, it will affect the partnerships developing between drug companies, charities and Governments to make information about the human genome freely available to the world through the bio-informatics system.

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In another dark corner is the role of the insurance companies and their so-called right to know, which is being strongly debated and raises deep worries. The genome project will increase knowledge, and issues such as the availability of mortgages, health insurance, life insurance policies and long-term health care allowances cannot miss the scrutiny of the insurance companies. It does not take much imagination to see how those companies might use information about predisposition to diseases.

There is also the prospect that individuals might refuse genetic tests if they feel that they will be discriminated against or lose the chance to receive health care facilities. In the history of health care in the United States, there are many examples of companies discriminating in their hire and fire policies against groups of individuals who are susceptible to, for example, certain chemicals, as they might go to court and seek compensation. The same problem could arise with new genetic testing. Employers might be tempted to insist on such testing to "improve their work force.

Government policies will clearly have a direct and indirect effect on those issues. For example, no significant practical changes in health delivery will occur without an effective method of disseminating information throughout the health service. At the same time, the public will be drawn into the debate through the media, and advantages and problems will receive the scrutiny of our unbiased press.

Many professionals in the national health service see the changes as a threat, and that suspicion is allied with the enormous strain that they are under, which is currently highlighted by the flu. There was absolute meltdown on the issue of genetically modified organisms, and the public turned against what can be argued to be a bona fide science that may have positive effects on food production. If the Government are not to repeat that meltdown, they must start to engineer technologically driven changes in the health service.

The ethical and legal questions need to be addressed, and I can touch on only some of them. I am afraid that the health trusts are unresponsive to the changes, and there is certainly no evidence that the Government have budgeted for the retraining programme, new equipment or a public debate on the issue. Nor, as I understand it, have they budgeted for new research investment in the project as it takes off into other horizons.

The case for a long-term health care strategy incorporating those problems is unarguable. If evidence-based decision making in the health service is to result in therapeutic effectiveness and cost-effectiveness, the human genome project must be tied together with primary care services and health technology assessments. There is currently a great divide between genetic knowledge and clinical practice. Only Government can organise beyond the fragments that make up our health service. With the human genome project, we can move the debate away from the misery of discussing the rationing of health care resources to a real debate on the evolution of rational care. Do the Government have such a strategy?

Genome research will turn medicine on its head. Diagnosis will depend on genetic tests. Patients will ask what chances they have of becoming ill, and we need to plan the restructuring of the national health service before the project comes to fruition.

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12.39 pm

The Parliamentary Under-Secretary of State for Health (Yvette Cooper ): It is entirely appropriate that my hon. Friend the Member for Norwich, North (Dr. Gibson) should have chosen the human genome project and its effects on health as one of the first topics for debate at the start of the new millennium. He suggests that the results of that work will be as revolutionary as the discovery of the wheel. He is right. The scientific and technological achievements so far associated with the human genome project are arguably some of the finest to have been seen in the previous millennium--and the potential is greater still.

The human genome project has many implications for health and many applications in health care in the broadest sense, and my hon. Friend traced some of its potential benefits and effects. During the next five to 10 years, we expect to see the development and introduction of some innovative modern technology, including new and improved ways of diagnosing disease earlier and more accurately. Indeed, as he said, we shall be able to identify genetic predisposition to some diseases. For example, we may be able to predict susceptibility to coronary heart disease and design tailored preventive strategies to help people to reduce their personal risk.

Information from the human genome project will also be used to develop new drugs and therapies. We shall then be better placed to target those drugs and therapies to individuals whose genetic profile makes them better able to respond to particular treatments, and with a lower risk of side effects. That is the expanding area of pharmacogenomics, in which drugs will be made to suit people's individual metabolisms and the severity of their disease. That will obviously help us to target our precious drug resources to the most beneficial areas--to where they can make the greatest difference.

As my hon. Friend pointed out, we shall also be able to unravel some of the relationships between the genetic and environmental causes of disease and to identify the combination of life style and environmental changes that will help to reduce ill health. That opens the door to the development of new public health strategies that will benefit the entire population.

The potential of the human genome project cannot be overestimated. The Government's job is to harness that potential. My hon. Friend is certainly right to say that the genetic revolution is likely to change the focus of health care from diagnosis and treatment towards detection and prevention. It will also force us to embrace new ways of thinking about public health care in general. It also means new operating methods for the NHS. The important question is what the Government should do to ensure that the project delivers maximum health benefit.

Several factors need to be considered. I shall try to respond to the points raised by my hon. Friend, although not necessarily in order. First, we need to encourage an environment that will support the development of those new, safe and cost-effective technologies, drugs and diagnostic tests. Secondly, we need to be sure that the NHS can use those new drugs and treatments in the most efficient way. Thirdly, as my hon. Friend said, we need a work force who can keep up with those rapid developments and turn them into

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practical benefits for patients. Fourthly, we must establish a proper ethical framework to allow us to respond to the genetic revolution and to answer the complex ethical, legal and social challenges that scientific progess will throw up.

I shall run through the Government's approach in each of those four areas. We do not yet have all the answers, but we have the foundations of a strategy to respond to the opportunities and challenges presented by the human genome project. We need to encourage the development of new treatments and technologies to benefit human health. The pharmaceutical industry has already made a considerable investment in sequencing the human genome. It clearly believes that more rational approaches to drug design will be developed and that additional cellular targets for therapeutic intervention will be identified.

To make effective progress in this work, scientists could benefit from access to databases linking genetic profiles to health records. It is worth noting that public and private health care funders are currently considering the creation of a genetic database of about 500,000 individuals for prospective genetic research. Participation will be entirely voluntary, and electronic access to NHS records will be needed to ensure efficiency and cost-effectiveness.

Ethical considerations can never be far from our minds as we consider the proposals. Even with an entirely voluntary database, proposals to give wider access to detailed patient records and tissue archives must take into account the complex issues of consent, confidentiality, privacy and public acceptability. My hon. Friend is right to say that there must be a properly informed public debate on such issues before we can progress.

My hon. Friend raised concerns about patenting the human genome. I certainly agree that patenting every part of the human genome would be unwarranted and undesirable. Fortunately, the aim of the human genome project is to make nucleotide sequence information immediately and freely available to the international research community without fees, patents or other limitations.

Encouraging widespread research is not enough. We need to ensure that new developments that offer real benefits to patients can be actively promoted and used by the NHS, while ensuring that public safety is not compromised. We already have, of course, a well-developed regulatory system, with the Medicines Control Agency--a world leader in the speed and thoroughness of its assessments. In future, the National Institute for Clinical Excellence will also have a role to play. Its role includes the appraisal of the clinical and cost-effectiveness of innovative treatments and the development of clinical guidelines to help their effective introduction across the NHS. Along with and supporting NICE, two key systems are in place to help the NHS to respond to the challenge that my hon. Friend describes.

First, the national horizon scanning centre at the university of Birmingham, which is funded through the NHS research and development programme, identifies significant new developments that could impact on health and the treatment of disease. My hon. Friend is right to point out that early intelligence of those

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developments means that better strategies can be planned and implemented when they are ready to be taken by the NHS. The national horizon scanning centre is maintaining a watching brief on the outputs of the human genome project and assessing likely impacts.

The second system is the health technology assessment programme--an NHS research and development programme that selects mature technologies and interventions of current importance to the NHS and assesses their effectiveness. Such research and development feeds into NICE, allowing it to provide the guidelines across the NHS to enable the smooth take-up of those new technologies and interventions as they are developed.

My hon. Friend talked about work force issues and training doctors to keep up with progress in genetics. He is right to say that all the knowledge in the world is a fat lot of use if we do not have the trained staff to put it into practice so that patients gain the benefit of the new information. It takes significant time to train professionals to deliver specialist services.

My hon. Friend talked about new doctors for the new millennium. I would go wider and talk about new health care workers for a new millennium, because we need to recognise the implications and requirements right across the NHS work force, not simply for doctors. At present, medically qualified personnel represent the first port of call for the provision of specialist genetic services, but that may not always be the case as the genetic revolution begins to extend the role of nurses and other health care professionals into areas traditionally occupied by doctors.

All professional groups--whether doctors, nurses, genetic counsellors, scientists or others--will need education and training in the new genetics. New courses will be needed. New programmes of continuing professional development will need to be put in place so that people are up to date with the new developments and the advantages that they can bring. That means good dialogue between those in the NHS who need the courses and training and those in higher and further education who may provide them. Such dialogue exists, but the genetic revolution highlights the need to extend it and ensure that we are able to respond swiftly to rapid developments and change.

We must ensure that the right number of professionals is given access to all the pre and post-registration courses that they need. We must further develop the world-class centres that exist in the United Kingdom for teaching and researching genetics and for delivering high-quality genetic services.

The technical and logistical challenges posed by the human genome project are considerable, but we should not forget perhaps the most important issues: the ethical questions that rapid scientific progress in this field inevitably produces. For example, we need to have an open debate on informed consent. Confidentiality for patients is critical. Public trust in NHS professionals and institutions must not be undermined in any way. The question of who is authorised to release or gain access to genetic information raises complex ethical issues and must be subject to well-informed public

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debate. The right of individuals to know and understand their genetic profile may be paramount, but such matters have implications for blood relatives and children.

My hon. Friend rightly referred to the potential for genetic information to be used unfairly to discriminate, perhaps for insurance or employment purposes. Those are serious concerns, and we shall need to be vigilant to safeguard people against unfair discrimination as the technology develops. Insurance and employment matters have been the subjects of reports from the Human Genetics Advisory Committee. In the case of insurance, especially as the range of available tests grows, we are concerned that there should be no unfair discrimination on the basis of genetic test results. We need an appropriate regulatory framework to ensure that people are not deterred from having the tests that they need on health grounds simply because of concerns about insurance-related issues.

That is why we have established the Genetics and Insurance Committee, on which patients and the insurance industry are represented. That committee is drawing up a procedure for evaluating scientific and actuarial evidence on specific genetic tests. Similarly, we are concerned to ensure that there is no unfair discrimination in employment on the basis of genetic testing. The Government expect to respond shortly to the report of the Human Genetic Advisory Committee.

It is likely that the new Human Genetics Commission will return to those issues. The commission's role is to analyse current and potential developments in human genetics and to advise Ministers on their likely impact on human health and health care and on their social, ethical, legal and economic implications. It will advise on the strategic priorities for research and for the delivery of genetic services by the NHS. Finally, and perhaps crucially, it will consult the public and other stakeholders to encourage debate and facilitate the development of better public knowledge and understanding of the many complex issues related to the outputs of the human genome project and its effects on health.

My hon. Friend is right to say that information from the new human genome project will force us to embrace new ways of thinking about public health, the prevention of ill health and health care delivery across the NHS. All those involved in the provision of medical service will be affected, whether they are part of the caring professions, part of the academic sectors, or part of the commercial sectors that serve them. The public should be able to gain an improved understanding of health and the causes of disease, so changing their expectations of health care.

These are exciting times and partnerships between all the key players in the public and private sectors will be essential to respond to the challenges and opportunities that will flow from the human genome project. We need to work together to promote research and scientific progress and to ensure that we have a competent health care work force to deliver the genetic services of the future. Most importantly of all, we all must engage in a public debate on the benefits, risks and consequences of the human genome project and all its spin-offs.

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That represents a continuing and expanding agenda, and we certainly do not yet have all the answers. I hope that I can rely on my hon. Friend's support for the strategies that we need to develop and on his contribution to the Department of Health's development of strategies to respond to the human

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genome project in future. We must ensure that the project's outputs can and will be used to improve the health and well-being of the citizens of this country.

Question put and agreed to.

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