Human Genome Project

HC Deb 26 June 2000 vol 352 cc659-68 3.33 pm

The Minister for Small Business and E-Commerce (Ms Patricia Hewitt)

Madam Speaker, I should like to make a statement on the human genome project.

This morning the Wellcome Trust and the Sanger centre in Cambridge announced, together with their international partners, that the initial stage of the work to map the human genome had been completed. The work, which has been carried out in 16 centres across the world, has led to 85 per cent. of the human genome being accurately deciphered. Work in hand and still to be finally checked will lead to 97 per cent. of the genome being read.

That is an enormous scientific achievement and represents the culmination of an international project which will be of benefit to all humanity. The project has been a co-operative venture from the start and I should like to pay tribute to the central role of the United States and the other countries—Japan, France, Germany and China—with which we have worked to achieve our goal.

The international collaborative nature of this work stems from co-operation which began in the 1980s between John Sulston, working at the MRC laboratory of molecular biology, and Robert Waterston from Washington university. They first produced an outline of the genome for a particular type of worm, called C elegans. But their ultimate goal was to sequence the worm's genome in its entirety. Their success proved that sequencing the human genome, while far more ambitious, would be possible in principle. However, with the techniques available in the 1980s, it would have taken more than 1,500 scientists an entire century to complete the work.

John Sulston was key to the plan to set up the Sanger centre in 1992 with funds from the Wellcome Trust. The centre is named after Fred Sanger, who received his second Nobel prize for his pioneering work on the sequencing of DNA. The centre has played an important role in the development of the new and faster sequencing technique, which has led to the completion of the work far earlier than originally foreseen.

I pay particular tribute to the wisdom and foresight of the Wellcome Trust in largely funding the work in this country. British science is very fortunate that it has been supported by the huge resources of the Wellcome Trust, and that those resources have been used to such good effect.

The structure of DNA was discovered in Cambridge in 1953 by Francis Crick and Jim Watson, by their fellow Nobel prize winner Maurice Wilkins, and by Rosalind Franklin, who tragically died in 1957, before the Nobel prize was awarded. At that time, no one would have believed that by 2000, almost the whole of the human genome would have been sequenced. It is fitting that almost 50 years later, scientists at Cambridge should again be involved.

We should not underestimate the magnitude of that achievement. There are 3 billion chemical building blocks or bases in the human genome, packaged into 23 pairs of chromosomes. The order of those bases forms the code of life, providing instructions for the genes that help to make each of us who we are, and give us our particular characteristics. Our genes make us susceptible or resistant to certain diseases, and affect the way in which we react to different medicines.

Now that we have the sequence information, we shall be able to identify why changes in the usual code can lead to the development of diseases. Ultimately we should have a better understanding of the causes of major killers such as cancer and heart disease, and be able to develop effective treatments for them. We also have the prospect of personalised medicine, which means that both the course of treatment and the drugs prescribed will be tailored to suit the individual's genetic make-up.

It is because of the enormous potential of the human genome for increasing our understanding of human disease that in March 2000, President Bill Clinton and the Prime Minister announced in a joint statement that they would like to see "unencumbered access" to the sequence data.

President Clinton and the Prime Minister held a video conference this afternoon. They agreed that the common property of the human genome should be used freely for the common good of the human race, but that the implementation should not be abused, as the Prime Minister has said, to make man his own creator or to invade individual privacy.

As we proceed to use the new knowledge that the structure of the genome offers us, it is inevitable that a range of social and ethical questions will arise. We need to be sensitive to those issues, and to the different views and values that individuals will hold, and we need to debate them openly. The Human Genetics Commission, which we have recently set up to advise us on strategic developments in human genetics, will have an important role in that process and will consult widely. It will also, as far as it can, look into the future and advise us of the important issues that may arise.

There will be a continued need for international co-operation. President Clinton and the Prime Minister also spoke about that today, and concluded that the United States of America, the United Kingdom and other Governments throughout the world will now need to work together to develop the ethical, moral and legal framework that will ensure that this scientific leap forward benefits the many not the few, and strengthens all societies.

The sequencing of the genome is the end of one journey, but it is also the start of another. The Government are committed to being involved in that new journey. In the last comprehensive spending review, we increased the budgets of the relevant research councils by £142 million over the period to 2002 for research into human genetics.

I believe that in years to come, people will look back on this day and see it as the key to humanity's understanding of itself. We congratulate all the scientists involved on their remarkable achievement, and wish them every future success in taking that exciting work forward.

Mrs. Angela Browning (Tiverton and Honiton)

I thank the Minister for making her statement available to me earlier this afternoon; it is one of those statements about which there is genuine cross-party delight. We all understand its importance and we join the Minister in congratulating the international collaboration on the work, and especially British scientists on their work over the decades. I have an appointment, which has been in my diary for some time, to visit the Sanger centre next Tuesday, and I am genuinely looking forward to that.

I should declare an interest—as many hon. Members will—in that I have honorary positions with the National Autistic Society and the Alzheimer's Disease Society. Others will have their own personal interests. We are overwhelmingly encouraged by the news, and I hope that the project will come to fruition. I join the Minister in stating clearly that we will need to issue a word of caution to the general public so that expectations raised by today's marvellous announcement will not lead people to think that there will be an immediate solution for many conditions. However, the speed of progress in the past couple of years has been first class, and welcome.

There is a challenge to Governments. Will the Minister outline how the Government see the question of the cost of some of the treatments and medications that are likely to come from the research? Some will be disproportionately high for the few when we see them in reality in a few years' time. How is that influencing the hon. Lady's thinking and that of the Government in terms of treatments being available across the board, when science such as this creates new opportunities, with attendant costs?

The Minister announced that the United States and the United Kingdom have today jointly said that they hope that there will be "unencumbered access" to sequence data. How will that be affected by the new global agreement on patent law to which the UK and the US—if not all EU countries—are signatories? How does the Minister see the future in terms of patenting in this context?

Ms Hewitt

I thank the hon. Lady for her response and her questions. I agree that it is immensely important not to give the public the impression that there will be immediate solutions and treatments for terrible illnesses as a result of today's announcement. The hon. Lady asked about the costs of new treatments that will be developed on the basis of the human genome analysis. We have recently announced a record level of new funding for the NHS, which will give us the basis for expanding the range of treatments available to individuals.

It is worth adding that we should not assume that all the new treatments that science will make available will necessarily be more expensive than those available now. Some may be cheaper, not least because they will be more effective and better targeted than those available now. Also, we have established the National Institute for Clinical Effectiveness—[HON. MEMBERS: "Excellence."] I am grateful for that correction. The National Institute for Clinical Excellence will evaluate the cost-effectiveness of different treatments.

On patent protection and the crucial issue of making human genome data freely available, we have clear rules in the UK—soon to be reinforced by the EU directive on biotechnology patents—that will ensure that basic gene sequence information will not be patented and will continue to be available to all researchers and scientists. Companies, of course, will seek patent protection for inventions of their own that are based upon that freely available genetic discovery. That is necessary if the new diagnostic tools and therapies are to be developed. I believe that we have the right regime here in the UK which is soon to be enforced across the EU.

Mr. Tam Dalyell (Linlithgow)

Although my hon. Friend the Member for Norwich, North (Dr. Gibson) has had a Westminster Hall Adjournment debate on the human genome, could we have some indication that, at least in the autumn, the Commons will be able to discuss this extremely important subject properly? In the meantime, might it not be helpful to have a Green Paper setting out the complex patent position? It is all very well for the President and the Prime Minister to say that they want open access—I am sure they do. But what is the likely position in the American courts, where the opposition to this is determined to do what some us think is quite intolerable, and patent the alphabet?

My final question is very complex and should be addressed at an early stage. What information will be made available to insurance companies? Some of my student contemporaries who worked on this matter, such as Jim Watson, would be the first to be appalled if the information were used for purposes of exploitation by insurance companies. That was not what those people were about.

Ms Hewitt

My hon. Friend has raised some extremely important points. I know that my right hon. Friend the Leader of the House, who is in her place, has heard his request for a debate, and I am sure that she will consider it. There are several outstanding patent applications in the US, and I understand that the US patents office is currently reviewing its policy on patents and biotechnology. As I have already said, we think that it is enormously important to get the regime right and to continue to ensure free and open access to the basic alphabet of the human genome. Therefore, we will keep a close eye on developments in the US.

My hon. Friend also mentioned insurance, and there is real concern that we could end up with a genetic underclass of people who find it impossible to get insurance or employment because genetic tests predict that they might develop some disease. We want to prevent the unfair and inappropriate use of genetic information, and the new Genetics and Insurance Committee will allow the industry to use only specific genetic test results that are relevant to the setting of insurance premiums. This year, the GAIC will assess tests for inherited conditions that are covered by the Association of British Insurers voluntary code of practice on genetic testing.

Dr. Evan Harris (Oxford, West and Abingdon)

The Liberal Democrats share the delight at the Minister's announcement of the exciting news from the scientists in Cambridge and the US. Indeed, her statement reminded me of the excitement of genetics as I studied the subject at the medical school in my constituency in Oxford, which is full of talented geneticists. Many of the concerns that I wished to raise have already been mentioned by the hon. Member for Linlithgow (Mr. Dalyell), but on the question of genetics and insurance, does the Minister understand that people are concerned that the Government's position is too close to that of the insurance companies, and that there should be a moratorium on insurance companies being able to require individuals to reveal information about their genetic tests, which should be used for health purposes, not insurance ones?

Does the Minister recognise that the concentration of NICE on new treatments rather than existing treatments creates a barrier—unique to this country—to the introduction of radical new treatments that may at first appear difficult to afford? Drug and other companies may choose to innovate in other countries, because of the barriers set up by NICE. Does she recognise the concerns that exist in the scientific community that investment such as that which the Wellcome Trust made in the project might not be able to be repeated in public science today, unless further investment is made in the science base in the comprehensive spending review? The careers of young scientists in this country must also be nurtured, not abandoned.

Will the Minister also accept a word of caution that none of the new and exciting developments will be able to deal with much of the ill health that occurs in the developing world? We must ensure that we offer innovation and funding to those areas as well.

Ms Hewitt

I am grateful to the hon. Gentleman, and I acknowledge the fact that he and his colleagues share our excitement. On a more personal note, his father was, until recently, the distinguished dean of medicine at the Leicester university school of medicine, with which I have had some connection.

Insurance companies cannot now require anybody to take a genetic test, and that is as it should be. However, we have asked the Human Genetics Commission, recently established by us, to consider the wider social and ethical issues related to the use of personal genetic data in insurance and in employment. We shall continue to monitor developments in human genetics, and the possible need for a change in legislation to guard against genetic discrimination.

The hon. Gentleman also raised the issue of the possibly prohibitive cost of medicines based upon human genome research. I stress that we should not assume that these new treatments and diagnostic tools will necessarily be more expensive than those now available. The National Institute for Clinical Excellence is about promoting—not inhibiting—the take-up of effective medicine, and about getting rid of the present lottery of prescribing by postcode from which we suffer.

The hon. Gentleman raised the importance of strengthening our already excellent science base. As I have said, in the last spending review we substantially increased investment in the science base, specifically to ensure that there is full exploitation of the extraordinary potential of the human genome study.

Dr. Phyllis Starkey (Milton Keynes, South-West)

The Minister drew attention to the positive implications for health care of the finding of information on the human genome. Is the ministerial taskforce on science discussing the implications for all Government Departments of human genome information? In particular, is the Department of Health closely considering the implications for the reorganisation of primary care, if the national health service is to be able in due course to ensure that the information is used in the best possible way to inform people's treatment?

Ms Hewitt

Yes, the ministerial taskforce is and will be considering the implications of those developments. My right hon. and hon. Friends in the Department of Health are also considering the implications for the future organisation of primary care. I stress that we do not expect immediate developments in the treatment and diagnosis of disease. As we look further ahead beyond the next decade, we need to take into account the social and ethical implications, and the implications for health care, of these developments. I am pleased that the Human Genetics Commission has been jointly established by, and will jointly report to, the Department of Health and the Department of Trade and Industry.

Mr. Andrew Lansley (South Cambridgeshire)

I add my warmest congratulations to my constituents at the Sanger centre near Cambridge on their achievements announced today. My constituents there and at the laboratory of molecular biology, which is also in my constituency, next to Addenbrooke's hospital, will be aware that there is now an important job to do, of exploitation of the human genome. In effect, we have a map but we do not know yet where the treasure is buried. There is a great deal of discovery to be done to find it.

The LMB, and the Wellcome Trust at Hinxton, are sites around which a biotechnology industry cluster will develop. The Minister and her right hon. and hon. Friends have made several pronouncements on promoting biotechnology cluster development, especially in the Cambridge area. What additional measures is she now proposing that will be geared specifically to utilising the development, given that the prospects for expansion at Hinxton are now very good, and likewise at Addenbrooke's hospital?

Ms Hewitt

The hon. Gentleman will be aware of the exciting plans that the regional development agency for the Eastern Region is helping to co-ordinate for building upon the existing biotechnology-based cluster in and around Cambridge, and expanding it into a triangle of excellence between Cambridge, Norwich and Ipswich. My noble Friend the Minister for Science is working specifically on the further development of the biotechnology cluster in and around Cambridge. I shall ask him to write to the hon. Gentleman with further information in response to his question.

Mr. Andrew Miller (Ellesmere Port and Neston)

I am sure that my hon. Friend will share my concern about the poor reporting of this important science over a number of years, from the ridiculous headlines about Dolly the sheep right through to today. Will she discuss that with her colleagues, particularly in the Department for Education and Employment, with a view to using this opportunity to increase the public understanding of science? This is a matter of massive importance, and we must not allow people to go down the road of thinking that we have instant cures at our fingertips, or to be misled by some of the ridiculous stories.

Ms Hewitt

I entirely agree about the importance of high-quality rather than over-excitable reporting on scientific issues. I am glad to say that Geoffrey Watts, a distinguished journalist and the presenter of BBC Radio 4's "Leading Edge", is one of the members of the Human Genetics Commission. I hope that such excellent scientific programmes, and at least some of the scientific reporting in the daily newspapers, will give the public a rather better briefing on the enormous implications of the discoveries that have been announced today.

Mr. Ian Taylor (Esher and Walton)

The Minister is right to signal the leading role that the United Kingdom science base and UK-based scientists have played. I hope that the friendly relationship between President Clinton and Tony Blair is one in which the Prime Minister fully understands the implications of American policy. When I was a Minister with responsibility for science, when Dolly the sheep was cloned, the first call that I took was from the American special adviser on science to the President, who said that the President wanted quick answers to two questions: could the Americans steal the UK's scheme for a human genetics advisory commission, and why the hell did the Americans not do the science in their country?

The Americans are going to watch very closely to see how the project unrolls, and will try to take a leading part in it. Can the Minister clarify the question of patents? Of course patents should not be taken out on the human genome project and its broad findings, but unless the biotechnology industry can patent applications and innovative steps, there will not be progress in the application of drugs and cures arising from the basic knowledge. That is an important distinction.

Can the Minister help to solve, not simply stress, the problems that we might have with the insurance industry and with employment? One of the exciting things to come out of the project is that people can move into areas of preventive care, and can understand a little about how they might alleviate the effects even of hereditary diseases, because of our better understanding of the total picture of the human genome.

Ms Hewitt

On that second point, I entirely agree about the need to present a balanced picture and to understand the implications both for good and for potential harm.

The hon. Gentleman raised the vital issue of patenting. Under current UK law, human genes in the cells in our bodies cannot be patented. That is clearly right. As I said earlier, a European Communities directive will come into force later this year, establishing the same basic principle right across Europe. It will rightly make it clear that, as is already the case in the United Kingdom, patents will be available only for the invention of new technical solutions. That is also necessary to give companies the incentive that they need to make what may well be very substantial investments in creating new intellectual capital, and of course they will seek to protect those intellectual property rights.

Mr. Hilary Benn (Leeds, Central)

My hon. Friend rightly said that insurance companies cannot require individuals to disclose genetic information, but does she not recognise that as genetic testing develops, there is nothing to stop them inviting people to do so in return for a lower premium? Is it not likely that we will have to find a new way of pooling risk in insurance, if we are to avoid the sort of genetic exclusion that many hon. Members are worried about?

Ms Hewitt

I think that I said earlier that the Association of British Insurers already has in place a voluntary code of practice on genetic testing. It is as concerned as we are to get this right, in order to ensure that people are not discriminated against and unfairly prevented from getting insurance, but that insurance companies can continue to do their job properly. That is one of the major issues that we will ask the Human Genetics Commission to consider and advise us on, as they examine in greater detail the implications of the greater availability and accuracy of genetic testing.

Mr. Peter Bottomley (Worthing, West)

I join the Minister in welcoming the announcement of joint publication by the American and British researchers, and I agree with her declaration that the work is about six sevenths of the way through. Clearly, there is much more work to come.

Applications for patents have been submitted in the United States. The Minister said that no such applications would be granted in this country, but will she say whether any have been made? Will Government funds be needed to oppose patent applications, given the implications that will arise if a patent is granted in the United States? Will she join me in saying that there would be no objection to a patent on a diagnostic test or a treatment, but that we would object if such a patent blocked the introduction of better and cheaper tests and treatments? Is not the point of patent protection that it allows advance and progress, as opposed to freezing research and allowing no further change?

Ms Hewitt

I have already set out the legal position in this country. I am not sure whether applications for patents in respect of the raw data have been made here, but no such patent would succeed. Applications for patents on the raw data have been made and are pending in the USA, but the US Patent and Trade Mark Office is reviewing its policy in this area.

I draw the hon. Gentleman's attention to the joint statement made in March by President Clinton and my right hon. Friend the Prime Minister: To realise the full promise of this research, raw fundamental data on the human genome, including the human DNA sequence and its variations, should be made freely available to scientists everywhere. Unencumbered access to this information will promote discoveries that will reduce the burden of disease, improve health around the world, and enhance the quality of life for all humankind. In the video conference that they held half an hour or so ago, President Clinton and my right hon. Friend reiterated their commitment to open access to the data.

Dr. Brian Iddon (Bolton, South-East)

I add my congratulations to all those involved in this great discovery, not just in Cambridge and in America, but all over the world. I liken the research to a marathon: the starting gun was fired in 1953 with the discovery of the double helix, and today we are just passing the first mile-post.

I believe that future research will depend on three things. First, finance will be needed, as the pace of research will increase from now on. Secondly, the crowd must be kept cheering, so it is vital that the general public are kept informed and on the side of the scientists. Thirdly, legislators must keep a close eye on the race, in case the rules have to be changed from time to time. Does my hon. Friend agree that those three elements are essential if the research is to be kept going?

Ms Hewitt

I agree with my hon. Friend, and I stress that the most recent comprehensive spending review increased the budgets of the relevant research councils to ensure that research into human genetics could proceed. Further announcements will be made when the current spending review is complete. However, much of the next wave of research into how the information can be exploited for diagnostic testing and treatment will come from the private sector.

Mr. Michael Jack (Fylde)

The Minister rightly paid tribute to the work of the Wellcome Foundation in making possible the British effort towards mapping the human genome. In the United States, commercial investment in the Celera company has pushed the project forward. That company appears to take an aggressive stance, and it is clear that it wants to hang on to certain parts of the intellectual property in this matter. What discussions has the Minister's Department had with that company to establish whether its approach is compatible with the United Kingdom approach that she outlined? Here, the approach is to make the information open and available to all scientists, but that does not match the impression that I get of Celera's attitude.

Ms Hewitt

It is fair to say that the competition from Celera has helped to speed up the work of the human genome project. In this field, as in many others, competition has produced real benefits. We will be watching with great interest to see, for instance, what statements have been made today by the director of Celera about the terms on which medical and scientific researchers will have access to the human genome data that they have decoded.

It is also worth saying that because Celera took a different approach to the decoding of the human genome alphabet, there may well be real advantages to come as scientists compare the different alphabets arrived at through the different scientific methods.

Mr. Nigel Beard (Bexleyheath and Crayford)

I welcome my hon. Friend's statement on a major event in the progress of scientific understanding. What plans are there to publish the benefits of this breakthrough for the prevention, diagnosis and treatment of illness, and to indicate the regulatory process? In that way, public fears may be answered and reduced, and will not impede the application of this new science, in which Britain excels.

Ms Hewitt

My hon. Friend makes an important point. It is worth stressing that we should not expect immediate changes in the treatment or diagnosis of disease as a result of the work that has so far been done by the human genome project. The project has created the genetic map that will provide the foundation for a revolution in medical diagnosis and treatment that is yet to come. We can see, even from the publicity that there has already been about today's announcement, that the public will soon come to appreciate the extraordinary implications and the scale of importance of the milestone that has been passed today.

Mr. Michael Fabricant (Lichfield)

The Minister is right to play down expectations of immediate cures. I believe that Gray's "Anatomy" was first published in 1858, but it was some 70 years before people realised the link between the islets of Langerhans and insulin.

Can the Minister assure the House that the Government will take no steps to prevent any further research into human stem cells or similar tissue? That is the key that can open the door to the cures for many dysfunctions, including cancer and other congenital diseases, yet there are many siren voices who argue that any research on human cells should be banned.

Ms Hewitt

I am advised that the chief medical officer's working group is considering that issue. His advice has not yet come to the Government, and we have therefore not yet made a decision.

Dr. Howard Stoate (Dartford)

I add my congratulations to the many scientists internationally who have achieved this wonderful goal today. It has already been likened in importance to the invention of the wheel. However, many right hon. and hon. Members have echoed the real worries surrounding the issue, and I am pleased that the Minister has already accepted that there is the possibility of a genetic underclass. We need to be very careful about how the technology is rolled out.

May I call for an early and swift debate on this matter? Public opinion is quite sensitive at the moment, because of genetically modified foods, BSE and the like. I urge my hon. Friend to ask her ministerial colleagues if we can have a debate as soon as possible on the wide and significant issues raised by this extremely important discovery.

Ms Hewitt

I am sure that my right hon. Friend the Leader of the House will take notice of that further request for a debate on these important issues.

Dr. Julian Lewis (New Forest, East)

Are the Government not being uncharacteristically modest about the human genome project? Should they not at least have said a word of praise for the experimental laboratories in Walworth road and Millbank, whose successful trials in human cloning have led to the results that are so evident on the Government Back Benches?

Ms Hewitt

I had hoped that questions on the statement would pass without unfortunate references to human genetic treatment of such a kind. I shall resist following the hon. Gentleman.

If I may clarify the answer that I gave a moment ago, the working group led by the chief medical officer has completed its work, but the Government have not yet made a decision on it.