Alan Milburn – 2001 Speech at the Institute of Human Genetics

February 14, 2016 admin 2001, Alan Milburn, Speeches

Below is the text of the speech made by Alan Milburn in Newcastle-upon-Tyne on 19 April 2001.

It is a real pleasure to be with you today both to celebrate the achievements of the Northern Genetics Service and to welcome the new Institute of Human Genetics. You already provide services that are renowned nationally as well as regionally. Now thanks to all your efforts and the investments going in you will be able to provide world class genetic services for patients.

Hardly a week goes by without a new media story about genetics. Some of the advances we read about no doubt are more apparent than real. But one thing is for certain: genetics will, indeed already 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.

And yet, despite the profound potential inherent in the new technologies, it is a rare for any health secretary to speak about genetics. In part this reticence reflects uncertainty about the impact genetic advances will have on health care. In part it reflects unease about the ethical implications of some of these great steps forward. We have to get to grips with both.

In the process, we should not lose sight of what I am convinced are enormously exciting developments for human health. Late last year I convened a seminar on genetics in the Department of Health. Patient groups, doctors, leading scientists, the pharmaceutical industry and some of our country’s top geneticists attended. I learned a lot about both the potential and the problems associated with developments in genetics. What I heard convinced me that it is time for politicians and the public as well as scientists and clinicians to engage with the issue.

Any responsible government has a duty to assess the future challenges facing the country. Our horizon must be beyond the short term. We need now to be looking a decade or more ahead so we can ensure Britain is in the best position to benefit from the changes that will surely come.

Whether Britain prepares for it or not, advances in genetics will inevitably impact on health services and health prospects. The challenge for us is how best to ensure the impact is as positive as it will be profound; that it benefits all of our society, not just some of it.

I am no expert on genetics. I am a politician not a scientist. So what I want to say is less about the science of genetics – and more about the impact it can have.

I want to set out:

– what the Government believes could be the potential of genetics for improved health.

– the way we need now to be actively preparing the NHS so it can harness the benefits of these future advances for all the people of our country.

And 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.
We have before us a huge potential. A gift that modern science has bequeathed medicine and society. The breakthroughs initiated by Francis Crick and Jim Watson five decades ago and taken forward by teams of scientists throughout the world in the human genome project have given us not only new knowledge about life itself but the potential power to improve life.

The human genome project has already crossed a new frontier in scientific knowledge – the question now is whether we can harness that knowledge to cross a new frontier in medicine.

The implications of the advances in genetic knowledge are enormous – equal potentially for the conquest of disease to the discovery of antibiotics. This is a revolution, with the potential in the first half of this century to dwarf the impact computer technology had on society in the second half of the last century.

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.

Of course it is a complex business turning new knowledge into new treatment. For one thing, the relationship between gene and environment is currently insufficiently understood. So no-one can predict right now the scale of the impact of genetics on health care, any more than we can predict its timing. There are no guarantees. It is worth remembering: people of my generation grew up being told that by now we would be certain there would be men on Mars – either because we’d gone there or they’d got here first.

What makes advances in genetic medicine different is they are already happening. Some genetic tests are currently available. Many more are within reach. There are promising signs from pioneering gene therapy treatments. Some new drugs are already being designed for specific groups in the population who can benefit most. Indeed, most experts agree the biggest advance we are likely to see in genetics in the near future lies in the discovery of hundreds of new, better targeted drug treatments.

There is no “Big Bang”. Instead, we are at the start of a “slow burn” which can only accelerate in the future. Our job is to prepare for change to harness the benefits of genetic advances and avoid its dangers. To do that we need to secure public approval for progress and to actively prepare our health care system for that progress. I now want to deal with each of these issues in turn.

First then, the views of the British public. Most of us in this room can already see the potential for healing which genetics may bring. Yet the subject evokes strong public scepticism, sometimes even hostility.

A MORI survey just last month showed that while 9 in 10 people agreed genetic developments could have positive health benefits, one third worried that research on human genetics amounts to tampering with nature. The creation of Dolly the sheep and false claims about the cloning of humans have understandably exacerbated these fears.

Little wonder then, that there remains some confusion in the public mind about where the science of genetics ends and the nightmare of eugenics begins. The pre-condition for dispelling some of the myths and ending much of the confusion is better engagement between the medical and scientific communities and society as a whole. Government and the media share a responsibility to help foster a well-informed, national debate about the promise and the problems genetic discoveries hold out for our country in the years to come.

Many of the advances we are likely to see in genetics over the next decade will probably come in areas which are the least likely to raise profound moral concerns – such as pharmaco-genetics.

But in a climate where the benefits of scientific advance are not always as automatically accepted as once they were, we need to move beyond simply stimulating a national debate about genetics. It is unfortunate but true that BSE and other developments have inflicted real damage on the standing of science. In some spheres there is the risk of an anti-science view taking hold. To protect against that prospect we need to move beyond simply providing more information or better education to the public about the potential of genetics. We have to provide positive safeguards to address the public’s concerns.

The terrible lesson of history is that science can be claimed for evil as well as for good. So whilst science must be able to discover the facts, Governments – on behalf of the public – must be able to make judgements about the use to which those discoveries can legitimately be put.

Advances in genetics raise difficult ethical questions. Most people, I guess, would accept as a good thing genetic testing for susceptibility to heart disease in order to be better able to prevent it. The same positive view would probably apply if we were able to tailor drugs to treat a particular individual for serious illness or if we could cure cancer by altering the make-up of a particular gene. Conversely, the prospect of genetically designing babies for their looks or for their intelligence is, for most people, repellent.

At present in this country, human reproductive cloning is banned because the Human Fertilisation and Embryology Authority will not licence it. The ban is welcome.

But I believe we need to go further to offer an unequivocal assurance to the public. Human cloning should be banned by law, not just by licence. I can confirm today then that the Government will legislate in the near future to explicitly ban human reproductive cloning in the UK.

There are huge potential health gains in genetic advances but until we address and allay public concerns we will not gain public consent to realise the full benefits of genetic science.

We have made a start with the Human Genetics Commission to provide independent advice on the social, ethical and legal implications. There are understandable public concerns that the advent of genetic testing will lead to new forms of discrimination – in employment or insurance for example. The extent to which the public accept, demand or avoid genetic screening services in the future will depend in part on who will have access to genetic information. There are important issues of confidentiality to be addressed. The Commission is currently exploring some of them, most notably in regard to insurance. We have also set up the Genetics and Insurance Committee to review the evidence about individual tests. The House of Commons Science and Technology Committee recently reported on the same issue. It called for a temporary moratorium on using genetic tests for insurance purposes to give time for the wider implications to be explored.

The question of whether insurance companies should have access to genetic information has provoked much public concern. There are powerful arguments for not treating genetic information the same as other kinds of information for insurance purposes. Right now the relevance of many genetic test results is still poorly understood. Many tests can only indicate an individual has a predisposition to develop a condition not a certainty that they will. Even so forced disclosure of test results could deter some people from taking tests at all, potentially putting their health at risk for fear of suffering discrimination by insurance companies or even by employers. In the longer term the danger we need to guard against is the creation of a ‘genetic underclass’, where high risk individuals are excluded altogether.

These are complex issues and it is for these reasons that the Government has asked the Human Genetics Commission to review the wider social and ethical aspects of the current policy on the use of genetic test results for insurance. We await their report and recommendations. Clearly the report is likely to give rise to a number of long term issues that will need careful consideration.

What I can say today is that the Government will look sympathetically at any proposals to prevent the inappropriate use of genetic information for insurance purposes, including legislation if necessary. If the Human Genetics Commission recommends a temporary moratorium on the use of genetic tests by the insurance industry then we will pursue it.

There will need to be safeguards to protect individuals from families affected by genetic conditions such as Huntingdon’s disease. I will therefore consult with genetic support groups and the insurance industry to examine what can be done to improve matters for those whose family history makes insurance difficult.

As the debate on insurance and genetics is revealing, genetic advances require new thought to be given to regulation nationally and internationally. In truth, scientific advance has outstripped the existing regulatory response. Without appropriate regulation, lack of public confidence will remain a significant barrier to fully harnessing the health benefits genetic developments represent.

Genetic advances can be a force for good. But that requires more than just public confidence. It requires active preparation. The genetics revolution has begun. It will only move forward faster in the future. It is time we as a nation started preparing today for the opportunities of tomorrow. Let me now set out then the preparations I believe the NHS must now make.

Whether it is genetic testing or pharmacogenetics or, in time, developments in gene therapy, the genetics revolution is going to make the NHS of the future look very different from the health service of today.

Developments in genetics should allow us to eradicate much of the trial and error common in medical practice. Much of the health service’s work today is based on a model which aims to ‘diagnose and treat’ conditions. Modern medicine has made great strides forward. But much of it still only comes into play relatively late in the history of an illness. Developments in genetics should allow us to test or screen for risk factors long before the symptoms of disease develop. The NHS of the future should increasingly allow us to ‘predict and prevent’ the common diseases of later life.

Genetics will never mean a disease-free existence; but understanding of genetics could eventually help to free society from some of today’s major diseases. The plans my department are currently discussing with the Wellcome Trust and the Medical Research Council for one of the world’s largest studies – involving 500,000 volunteers – into the interaction between genes and environment will give us further vital clues.

To realise the potential genetic advances could have, however, the NHS will need to change the services it offers. Hospitals might do less invasive surgery but more gene therapy treatment. Overall the NHS will need to gear itself increasingly to prevention and not just treatment. In primary care where the majority of patients will be seen, the pattern of care will alter, as new services take the place of existing ones: more genetic screening alongside more specialist genetic counselling; more regular check-ups; more help for people to give up smoking not just advice that they should; more exercise on prescription alongside drugs on prescription, tailored to the individual’s personal genetic profile.

Patients, of course, must be able to choose how best they as individuals can benefit from these genetic advances. People have a right to know and a right not to know information about their own health. For genetic tests, the rate of take-up will inevitably depend on factors such as family health history and the possibility of treatment. There will be huge dilemmas for the individual patient – as women who are at high risk from breast cancer have already found after deciding whether or not to have a genetic test. But overall, I believe genetic developments should give patients more control and more choice over their own health.

The role of health professionals will be to help patients choose what is right for them. There will be a greater emphasis on providing clear information to patients so they can make informed choices. Informed consent should be the governing principle here, with a greater sense of partnership between professional and patient.

Genetic services will spread out of specialist centres into GP surgeries, health centres and local hospitals as I know you are now doing here in the North East. A new generation of specialist primary care professionals are likely to develop to work alongside family doctors – and help relieve the burden on them – by specialising in genetic testing, advice and counselling. Mainstreaming genetic services in the NHS will also require big changes in how we educate and train health professionals.

There is then a lot of preparation to do. Day-by-day we are seeing advances which could offer more patients the benefits of genetic services. Today for example, I am able to announce agreement between my department and the Cancer Research Campaign for the use of their world class research to support testing for the presence of breast cancer genes. The CRC has held a patent on the detection of one of the breast cancer genes for some time. Such a patent could have made it prohibitively expensive for the NHS to test women for this gene if the CRC had used their patent powers to impose a charge. The agreement we have reached with the CRC ensures that women will not face this problem – so incidentally giving the lie to the claim that some have made that genetic patenting inevitably will land the NHS with unaffordable costs. I can also say today that discussions are underway with a leading United States-based biotechnology company, Myriad Genetics Inc, to enable NHS patients to benefit from the company’s extensive research and development on a related breast cancer gene. I hope these discussions will be a model for future collaborations with our health service.

These advances, however, inevitably place great strain on NHS genetic services. I want to pay tribute not only to the work that John and his team do here in Newcastle but to the work of our regional genetic services up and down the country. You already provide vital – sometimes life-saving services for thousands of people with single gene disorders. You are at the sharp end of the genetics revolution – a revolution with the potential to transform health care in our country but which must not be allowed to overwhelm it.

Here in Britain we start with a great advantage. Despite the very real pressures our genetic services are under, they are the envy of Europe. A recent study in the European Journal of Genetics concludes that the UK and the Netherlands provide our continent’s most comprehensive genetic services.

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 a world leader. Now it is time to enhance the capacity of our genetic services so they are better able to capture advances in genetic medicine for many more NHS patients.

Today I can announce a £30 million package of new investment in NHS genetic services.

Firstly, the government will increase the number of consultants specialising in genetics. The NHS is in the midst of major expansion, after decades of neglect and under-investment. Already there are than 17,000 nurses and 6,500 more doctors than when we came to office. The next few years will see further expansion still. Genetic services will be a major beneficiary. Consultants numbers will double from 77 today to over 140 by 2006.

Secondly, we will also double the number of scientific and technical staff working in genetics over the next five years to provide the specialist laboratory skills needed to maximise benefits to patients. Staff numbers will rise by 300.

Thirdly, we will more than double the number of genetic counsellors working in the NHS not only in specialist units but in primary care as well. There will be at least an extra 150 posts and we will work closely with Macmillan Cancer Relief to develop more specialist genetic cancer counsellors.

Fourthly, we will create two new national reference laboratories for genetics specialising in rare genetic disorders and identifying new tests and treatments that can bring benefits to patients.

Fifthly, we will address the lottery in care in genetics services. As the Bobrow report recommended, we will now, for the first time, form our regional genetics services into a single national network capable of providing specialist services to groups of patients regardless of where they happen to live. The creation of a Genetics Commissioning Advisory Group involving patient representatives under the chairmanship of Sir John Pattison will also ensure greater national co-ordination of genetic services.

More consultants, more scientists, more counsellors, new laboratories and a new national network of specialist genetics centres – a five point plan for expansion in genetic services – will allow the NHS to offer greatly enhanced treatment and care for patients.

The number of NHS patients being seen by specialist genetics services will increase by 80% to 120,000 a year over the course of the next few years. More NHS patients with common conditions like cancer as well as those with single gene disorders will be offered tests. Regional centres will be able to routinely see the family members of patients so they also have the information and the tests necessary to make decisions about their own future treatment needs.

Waiting times to see a genetics specialist will fall from as long as twelve months at present to just three months in future. Laboratory test times too will fall and test numbers will double by 2005.

This is the first tranche of investment we will be making to ensure the NHS is able to offer patients the benefits of the latest genetics advances. Further investment will be needed in education and training for staff and in IT systems as well as in new equipment. I know that in this region funding for genetic services will expand by one quarter over the next three years alone. The investment we are making is not just a signal of our belief that these advances hold out real health care benefits, it is confirmation of our belief that the NHS is uniquely placed to maximise those benefits for all.

Some argue that the costs of absorbing these advances will swamp the NHS. That is not my view. 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. For example, using genetic profiling to more accurately prescribe drugs will reduce side-effects, improve treatment outcomes and save the NHS a small fortune. Advances in pharmacogenetics could reduce the estimated 1 in 20 of hospital admissions which result from adverse drug reactions and currently cost the NHS anywhere between £1billion and £2.5 billion a year. Similarly, once we are able to identify say, the 10% of people most at risk from heart disease we will be able to provide them with extra preventive services. One estimate puts the costs of doing so at around £60 million with the savings at around £200 million.

There is no other health care system better placed to harness the potential of the great advances now within reach than the National Health Service. The way the NHS is organised – providing care for all on the basis of need, not ability to pay – uniquely suits it to capturing the benefits of genetics for the good of all.

Our nation’s health service is our best defence against the nightmare vision of a ‘Brave New World’ of two tier health care: 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.

Britain’s system of socialised health care means 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. Worse still that they are priced out of care or cover altogether. Already in America developments in genetics have stirred precisely these concerns.

Genetic advances lay bare the fallacy that private health insurance is the way forward for our country. Genetics strengthens, rather than weakens the case for Britain’s NHS.

We in this country have good reason to be confident of being able to harness the benefits of genetic advance for all our citizens, rather than just a privileged few: the NHS, funded by all and there for all; genetic services, already among the best in the world, and now to be enhanced; and on top of this international strengths in science, education and industry.

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 now 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.

The Government wants to see British science leading the World so there is growing investment from the public purse too. Tax reforms – including new incentives for research and development – will help entrench further investment still. Already the science budget is receiving unprecedented increases. 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.

These are huge advantages for our country. If properly harnessed we can reap a double benefit: prosperity for our country’s economy and progress for our country’s health. We can now go on to pool these advantages to realise the economic and health gains genetic developments could bring.

The NHS Plan we published last summer set out our intention to establish a number of genetic knowledge parks. Today I want to tell you what they will look like and how they will work.

The knowledge parks will bring together on a single site 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. Developing research and industrial clusters of this sort has already produced enormous gains in the IT sector both in this country and abroad. Where we have seen the development of a silicon valley in the past we can now develop a genetics valley in the future. Indeed with the UK’s academic, industrial and clinical strength we should aim to have more than one of them. Nor should these knowledge parks be a cold scientific or clinical environment. As here at the Centre for Life, I want them to have an open educational ethos engaging in information and debate with the public about both the science and ethics of genetics.

In the last few months we have had preliminary discussions with a number of potential partners to develop the first genetics knowledge parks. The Economic and Social Research Council is interested in a joint venture on the personal, social and ethical issues. We are discussing a joint investment with the Medical Research Council on bioinformatics. One of the UK’s major pharmaceutical companies has agreed in principle to collaborate on a genetics park. A number of universities are keen to participate too.

Stephen Byers, the Secretary of State for Trade & Industry, is working with me to ensure the new parks contribute to the government’s regional economic policy agenda. I want some of the genetic knowledge parks to strengthen the economies of regions which traditionally have had lower levels of research and development, lower indigenous company formation and fewer industries of the future.

There is enormous potential here. We need to act quickly if the UK is to maximise the comparative advantage we currently enjoy against growing global competition. I can therefore announce today, in addition to the £30 million for the NHS, a new £10 million fund – the Genetics Knowledge Challenge Fund – to establish up to four knowledge parks in England over the next few years.

Some of the new Genetics Knowledge Parks may be based in existing centres. Others will be new centres altogether. In the near future I will be inviting bids from universities, regional development agencies, NHS Trusts and private sector firms who have formed collaborative ventures to develop proposals for genetics knowledge parks. I expect to give the go-ahead to the first tranche of genetics knowledge parks before the end of the year.

What I believe is now needed is a major national effort to put Britain at the leading edge of new genetics services and new genetic technologies. We should be cashing in on the dominance we as a country currently enjoy. But that can only happen if we prepare for change and if we ensure that the public have confidence in those changes.

I have tried today to set out how I think we can take the genetics agenda forward in terms of public safeguards, service enhancements, economic developments.

As with any new science we are in uncharted territory. The response of some is to turn their back on genetic advances. To say that the implications are too big or too difficult to contemplate. To leave it to chance, to others, or to the whim of the market. I believe that would be a profound mistake for Britain.

The developments we are seeing have the capacity to bring so much good to so many people. But I recognise there is much to do if that latent potential is to be realised. I have touched on some of the crucial issues today. I do not pretend to have covered all the questions, let alone given all the answers. More work and more consideration, more public information and debate is necessary.

So I can announce today that next year, we will publish a Government Green Paper on genetics – the first of its kind. It will examine in depth the ethical, clinical, scientific and economic issues. It will build on the work undertaken by government, parliamentary committees, the Human Genetics Commission, research councils, charities and others.

There are many points of view on genetics. I want the Green Paper to be a focus for them – and to be informed by a spectrum of views and interests including patient groups, the wider community, the NHS, science and the pharmaceutical industries. I am therefore establishing an advisory panel made up of representatives from these interests to look at some of the issues the Green Paper will need to cover. The panel will be led by Lord Turnberg, the former President of the Royal College of Physicians, who has, I am delighted to say, agreed to chair it.

I believe the Green Paper will help stimulate a real national debate on the future benefits of genetics for our country. But the new frontier of genetic science and medicine recognises no boundaries between regions or nations: the clinical and ethical issues which genetic discoveries raise will be global. Britain has to maintain and enhance its position as a leading world player in the development and application of genetic technologies.

And so, as part of the preparation of the Genetics Green Paper, Britain is to host an International Conference on Genetic Medicine bringing together the world’s leading experts, to provide a global perspective on these issues.

Genetics presents a new frontier for the future of medicine and health care. The NHS should face that future with confidence. I believe Britain’s health service is in a stronger position to secure the benefits of the genetics revolution for our people than any private alternative. Better able to establish the trust of its people. Better equipped to translate scientific discovery into clinical success. Better positioned to exploit the potential of genetic testing for all our population rather than see genetic testing leading to exploitation of some in our population.

If the NHS prepares for it – as we are determined it shall – the genetics revolution will make the case for a health service based on clinical need and not ability to pay. The values of the NHS will be invaluable as the full scope of this new science reveals itself. That is why I say today, properly prepared, the development of genetic medicine will make, not break the NHS.

Our task is to prepare the NHS properly. To set boundaries beyond which science will not go but, as we have with stem cell research, to break down barriers to get the best for patients. To involve the public and invest the public finances in new technologies and new treatments which can help to improve the National Health Service and our nation’s health prospects. Above all, our task now is to determine how best we can harness the potential of genetics for the benefit of all our people and for all parts of our country.

This is the challenge of genetics. It provides an enormous opportunity for our country.