Alan Milburn – 2002 Speech on Genetics and Health

Below is the text of the speech made by Alan Milburn, the then Secretary of State for Health, on 16 January 2002.

PUTTING BRITAIN AT THE LEADING EDGE OF ADVANCES OF TECHNOLOGY

I am delighted to see so many of you here today. We have representatives from the NHS, the professions, industry, academia, patient support groups and many others with a close involvement in genetics.

I am no scientist and certainly no geneticist but I believe that advances in genetics have huge implications for us all. Few people now deny that genetics is changing the world in which we live – holding out the potential for new drugs and therapies, new means of preventing ill health and new ways of treating illness.

Progress now in the science and scope of genetic technologies is moving at an incredible pace. Almost every week there seems to be some new breakthrough or potential application.

Nine months ago, I spoke about a new ambition for Britain – to put us at the leading edge of advances in genetic technologies and to develop in our country modern genetic health services unrivalled anywhere in the world.

It is an ambition for the long term since no one can predict right now how long it will take before the full impact of these advances are felt. The genetics revolution is already underway. What is clear is that it is time we more actively prepared to embrace it. I want to use my speech today to outline some of the actions we are taking to do so.

The implications of the advances in genetic knowledge have as great a potential to conquer disease as the discovery of antibiotics. In time we should be able to assess the risk an individual has of developing disease – not just for single gene disorders like cystic fibrosis but for our country’s biggest killers – cancer and coronary heart disease – as well as those like diabetes which limit people’s lives.

We will be able to better predict the likelihood of an individual responding to a particular course of drug treatment. And down the line, we will be able to develop new therapies which hold out the prospect not just of treating disease but of preventing it.

The potential is immense. Whilst genetics will never mean a disease-free existence, greater understanding of genetics is one of our best allies in the war against cancer for example. Advances in genetics will lead to a greater understanding of the occurrence of cancer and its treatment.

Some rare cancers are caused by defects in a single gene and have clear patterns of inheritance from generation to generation. In these cases genetic testing could predict disease development in individuals with no symptoms.

In other cases there is an interaction between genetic changes and environmental factors. The presence of the genetic changes can increase the risk of cancer. Careful monitoring, with the possibility of making some changes to patients lifestyle, aimed at lowering the risk of developing cancer, could make a real difference.

And research into pharmacogenetics has identified genes affecting the impact of more than 20 drugs. In partnership with other cancer research funders we will determine how this knowledge can be used for anti-cancer drugs.

So in the coming years, expanding knowledge of cancer genetics will have a major impact on the ability to predict an individual’s level of risk of developing cancer; the ability to detect and diagnose cancer early and the ability to select treatments most likely to be effective. Ultimately the genetic revolution may lead to ways of preventing cancer.

Government’s job is to help prepare our country to harness the benefits of genetic advances and to avoid its dangers. That can only be done in partnership with science and industry, medicine and the National Health Service. It can only be achieved if breakthroughs by the scientific community are matched by public support and understanding in the wider community. It will only happen if we are all open and honest about the potential and the pitfalls which the genetics revolution presents.

That is why later this year I will publish a Green Paper setting out the Government’s vision of how the genetics revolution could transform treatments and services available to NHS patients. It is intended to foster a more informed national debate about genetics. To try to move the debate beyond the horror stories and half-truths towards a realistic assessment of what the exploitation of genetic technology can and cannot offer society.

Your input into the Green Paper will be vital. I am particularly pleased to be able to use this Conference to publicly thank Lord Turnberg, who chairs the Advisory Panel on the Genetics Green Paper, and the other members of the panel, for their assistance and support.

It is unfortunate but true that BSE and other developments have inflicted real damage on the standing of science. It is fashionable in some quarters to be both anti-science and anti-medicine. To protect ourselves against that we need to move beyond simply providing more information. We have to provide positive safeguards to address the public’s concerns.

We believe there are huge potential health gains in genetic advances; we respect the need for science and scientists to stretch the boundaries of human knowledge and understanding in the field of genetics in the interests of human health but we will draw those boundaries carefully in order to gain public consent to realise the full benefits of genetic science.

We have to be careful not to suggest that public concern is based on irrationality or ignorance. It is not. Public concern about genetics is all too rational: it is based on a recognition that we are on the threshold of a science the full potential of which even the world’s leading scientists are not yet able to describe. Little wonder then, that sometimes science fiction takes the place of science fact. Our job – all our jobs – is to replace fiction with fact, to dispel doubt with understanding.

The public had understandable concerns about the use to which genetic tests would be put by insurance companies. Fears about forced disclosure could have deterred some people from taking tests at all. The impact of those fears, reducing the potential pool of genetic information, would itself have limited the scope for further advances in genetic science. That’s why I said nine months ago that we would consider a moratorium on the use of genetic tests by insurers. In October, following fruitful and effective dialogue with the insurance industry, the moratorium was introduced and the terms are stronger even than the Human Genetics Commission recommended.

It is though, the perceived threat that any advance in genetic science must necessarily herald a further step towards human reproductive cloning which is so corrosive of public support. That is why nine months ago I said human cloning should be banned by law, not just by licence through the HFEA. I gave a commitment then, that the Government would explicitly ban human reproductive cloning in the UK. In November – a little earlier than we had planned, as you may have guessed – we passed the Human Reproductive Cloning Act which put the legal position beyond doubt.

With human reproductive cloning now banned, with protections for the public over misuse of genetic test materials in insurance now in place, the way is open to us to have a more rational debate about how best our country can be at the leading edge of advances in genetics technologies.

Here in Britain we start with a huge advantage. According to the Nuffield Trust, no other country in the World provides a service which offers combined strengths in clinical, laboratory and research activities. When it comes to genetic services it is no exaggeration to say the NHS is already the envy of Europe. To stay ahead, in the decade ahead, the capacity of our genetic services need to be enhanced so they are better able to capture advances in genetic medicine for many more NHS patients.

We have in this country some of the best scientists, academics and universities anywhere in the world. The Government’s Medical Research Council and the Wellcome Trust were responsible for a major funding contribution to the human genome project. Over half of all European gene therapy clinical research takes place in Britain. The UK is home to world beating pharmaceutical companies. Our biotechnology industries have more drugs in late stage clinical trials than the rest of Europe put together. And – with the sole exception of the USA – growth in investment in pharmaceutical research and development outstrips the rest of the World.

There is growing investment from the public purse too. The Research Councils are now spending £600 million a year on biotechnology and medical R&D. Spending on genomics is set to rise by at least £60 million a year.

On top of our comparative advantages in industry, science and research we have the strength of a single, national health service, funded by all and available to all.

I believe there is no other health care 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 based – providing care for all on the basis of need, not ability to pay – are uniquely suited to capturing the benefits of the genetics revolution. They provide a bulwark against the inequalities and inefficiencies of 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.

The values of Britain’s NHS mean citizens can choose to take genetic tests free from the fear that should they test positive they face an enormous bill for insurance or treatment 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 genetics advances, the case for private health insurance as an alternative to the NHS diminishes. Properly exploited, genetics strengthens the case for the values of the NHS. Of course there will be up front costs if the NHS is to spread the benefits of genetic developments. But, down the line, there could be significant financial gains to put alongside major health gains.

To provide Britain with a real competitive advantage in the application and exploitation of potential genetic advances the NHS will need to change the services it offers: more gene therapy alongside invasive surgery; more genetic screening alongside more specialist genetic counselling; more drugs tailored to the personal genetic profile of the patient. Much of the health service’s work today is based on a model which aims to ‘diagnose and treat’ conditions. Developments in genetics should allow us to ‘predict and prevent’ the common diseases of later life.

Last April I announced a £30 million package of new investment in NHS genetic services to enable us not only to make significant improvements in existing services but to lay the building blocks for the future. More consultants, more scientists, more genetic counsellors, and a single national network of genetic testing services which I can confirm today will be fully functional by the end of this year. This expansion is already coming through and will allow many more patients to be seen more quickly by our NHS specialist genetics services.

In Trent, this funding will halve the reporting time for tests for hereditary cancers and the number of patients who can receive tests will more than double. In Southampton, 20% more families will be counselled and patients at risk of familial cancers will have to wait for less time to receive their test results. In Birmingham, more tests and quicker results will be available for genetic testing in leukaemias and bone marrow transplants, meaning that these patients can receive accurate treatment more quickly. In Cambridge, reporting times for new mutations will be cut from six months and more down to only 8 weeks. And in the South West, new clinical staff will allow substantial reduction in outpatient waiting times. And at Northwick Park this funding will allow 25% more patients to be seen.

Today we can take another step forwards with the establishment and location of two new National Genetics Reference Laboratories. The national reference labs will help the NHS to keep abreast of scientific and technological discoveries in genetics and develop new and improved genetic testing. They will explore how better ways of working in laboratories such as automation or the more effective use of junior staff can reduce reporting times and increase cost effectiveness. And they will train NHS staff in the application of new genetic tests and technologies; and support the national NHS genetic testing network.

I can tell the conference that the new National Genetics Reference Laboratories will be in Manchester at the North West regional genetics laboratory and in Salisbury at the Wessex regional genetics laboratory. Both have a well-deserved international reputation and have a track record in quality management.

The Department of Health is continuing to work in partnership with the Wellcome Trust and the Medical Research Council to develop the UK Population Biomedical Collection, an initiative now known as BioBankUK. This is the country’s flagship project on molecular epidemiology for the new century. BioBank UK will provide a national resource for scientists wishing to study the interaction between genetic, environmental and lifestyle risk factors in the development of the common diseases of adult life, especially cardiovascular disease, metabolic disorders and cancer. The study will involve collection of personal data on health and lifestyle and there will be long term follow up via NHS medical records to accumulate data on health outcomes.

The linkage of genetic and health information and the potential for using the database for a wide variety of analyses aimed at determining susceptibility to disease raises important issues about confidentiality, security of data and informed consent. These concerns have been voiced as recently as Monday by GeneWatch, and they were the subject of a debate in the House of Lords yesterday. The Government takes these concerns seriously and will not allow the work to proceed until they have been satisfactorily addressed.

I can also make a further announcement today. Last April I announced a £10 million Genetics Knowledge Challenge Fund to create four Genetics Knowledge Parks. I am pleased to say that with support from the Department for Trade and Industry the Challenge fund now stands at £15 million. Today I can announce six rather than four new Genetics Knowledge Parks.

These new centres of excellence will work together to help ensure Britain remains at the cutting edge of the genetics revolution in order to gain the maximum health benefits for our citizens. The knowledge parks will bring together clinicians, scientists, academics and industrial researchers. They will be centres of clinical and scientific excellence seeking to improve the diagnosis, treatment and counselling of patients. Research will help create successful spin out companies specialising in genetic technologies.

The Genetics Knowledge Parks we are establishing will lead to increased availability of new drugs and treatments. They will extend the range of diagnostic tests for both single and multifactoral gene disorders with this, in turn, leading to the introduction of further screening procedures so that disease progression and treatment can be monitored more effectively. They will develop pharmacogenetic tests for the targeted treatment of patients, not only getting the right medicine to the right person but also reducing the incidence of unwanted side effects. And, perhaps most importantly, the Genetics Knowledge Park network will improve public engagement and education about medical genetics.

So I can announce today that the Genetics Knowledge Parks will consist of consortia of institutions based in the following places, Newcastle, London, Oxford, Cambridge, the North West and Wales. I am particularly pleased that some of these new parks will be in parts of the country where research and development and new high tech industries need to gain a stronger footing. I hope the new Genetics Knowledge Parks will help those areas to do just that.

These new Genetic Knowledge Parks will provide some important new opportunities across the country. I am determined that we take the necessary action now so that we can grasp the new opportunity genetic science can deliver to patients in all parts of the country.

To do that we really do need your input into the preparation of the Genetics Green Paper.

Our message to the public should be this:

We need not fear the science of genetics if we put in place the proper public protections today.

We need not miss the opportunities of genetics if we prepare future advances today.

We should not think that the challenge of genetics is for some other country, some other industry, some other health care system, some other generation. It is for us – it is here today.

By building on our strengths, making the necessary investment and careful preparation now, Britain can indeed be at the leading edge of advances in genetic medicine. If we do so I believe the Genetics Revolution will deliver real and lasting benefits for future generations of NHS patients.