If you live in the UK and are aged between 45 and 69, you could receive a rather strange phone call early next year. It will be your doctor, inviting you to come in for a blood test to have your DNA stored for posterity. Your genetic make-up could be used to help scientists find the cure for cancer, heart disease and a host of other killers. But will most people leap at the chance of donating biological material? Or are people just too suspicious of scientists to take part?
The UK Biobank is an enormously ambitious project set up with million of funding. It will see DNA samples from half-a-million people in Britain stored on a database at the University of Manchester, and it will be far more than just a giant genetic library. The volunteers will also be asked to give details of their lifestyle, diet, surroundings and medical history so that scientists can make links between genes and environment.
Those who receive the call and agree to take part will become part of the world's largest biological database.
ILLUSTRATION: MOUNTAIN PEOPLE
Details of the scheme have barely been discussed in Britain but it has enormous implications for society. Its supporters say the information would thrust forward our scientific understanding of the most common diseases which cause premature death. Yet already the project is fraught with controversy and bickering among scientists, even before the first blood sample has been taken. The issue of who owns the information, and how private pharmaceutical companies will be able to access it, lies at the heart of those concerns.
The idea for the project arose from a meeting of senior Medical Research Council scientists in the late Eighties but found no favor under the then Conservative government. Labour, with Lord Sainsbury as its Science Minister, was far more welcoming towards projects involving genetics, and in June 1999 the first committee was set up to take the idea forward.
Awareness was fast growing of the impact of the Human Genome Project, the unravelling of the "instruction book for life" by exploring the sequencing of the code contained in every cell of our bodies. As the data was being mapped it became clear that enormous amounts of information would be made publicly available, without any clear roadmap of what to do with it.
What was missing was the other part of the jigsaw puzzle -- the corresponding environmental factors that interact with the genes to create disease or protect against it.
John Newton, chief executive of UK Biobank, says the scheme is the natural successor to the enormous advances made in public health during the 20th century, with the eradication of common infectious diseases.
"The new genetics provides a stunning opportunity to move ahead in our understanding of variability in human health," he wrote recently. "However, the genome itself is not the answer. This extraordinary insight into biological mechanisms must be used across the board for 21st century public health strategies."
Under the scheme half-a-million middle-aged people will be picked at random and invited by their doctors to provide information about their health. They will be asked to give a blood sample, be interviewed by a nurse and complete a questionnaire about their lifestyle, physical environment, diet and health.
They will then be studied over 10, 20, 30, maybe even 50 years, to look at how their destiny is shaped by the twin influence of genes and environment. Some of those volunteers will develop cancer, heart disease or mental illness. Scientists will be able to look back and see how those who became ill differed genetically from those who did not. Were there chemical markers in the blood, for example, which suggest a predisposition to some cancers?
In particular, it is the biomarkers in the blood, chemicals present due to the function of a gene, which excite scientists.
John Bell, regius chair of medicine at the University of Oxford, who chairs a scientific committee involved with the project, is enthusiastic.
"This is going to generate a lot of important scientific information," he said. "People need to know about this, about what it means. We now have this fantastic opportunity for research, coming from 25 years of revolution in molecular knowledge. There are many potential genetic tests that could be brought forward but you have to evaluate them."
Bell believes there is a huge lag between our current knowledge of genetics and our ability to do something practical with it.
"Predicting those who are at risk from this or that disease will come from measuring these biomarkers in the blood. The sexy bit of research is to find a cure for cancer, but the reality is that the first product of the genetic revolution will be a large number of new diagnostic problems," he said.
The molecular fingerprints of diseases will be identifiable, but diagnosis will have to go hand in hand with developing the therapies to treat them. In America, where patients pay for their health care, they will demand it. But will it be the same for the British health service where health care is free at the point of delivery?
From the beginning the Biobank idea was controversial because of the enormous amounts of cash it would take. In April last year the UK's Medical Research Council (MRC), which distributes funding across the country to scientists, along with the Department of Health and the Wellcome Trust, the largest research body in the UK, allocated US$5 million of start-up funding. This meant that other projects were told they could not get the money they needed to do their work. According to the journal Nature there were 36 top-rated projects which had to be rejected. This annoyed the UK's House of Commons Science and Technology Committee which accused the MRC of playing a "wild card" in backing an expensive scheme with dubious benefits.
Perhaps most worryingly for the backers there remain questions over whether the resource will provide a lucrative mine for "bioprospectors" looking to exploit the knowledge to create new tests or new therapies. Pharmaceutical companies will have a right to access the information, although not the right to gain information on individuals, in order to develop new tests. The Wellcome Trust and the MRC argue that this is essential otherwise there would never be any development of new therapies accruing from the database.
Others argue that it could engender widespread profiteering. There is concern about whether companies would be able to patent particular sequences of genes linked to a certain disease in order to gain a monopoly over future tests and treatments.
The patenting issue remains unclear, as the ethics and governance committee of Biobank is currently hammering out the issues. However, the Wellcome Trust spokesman said it was possible that if a particular sequence were used to develop a test then intellectual property rights, governing patenting, might be needed to protect the data.
"All this will have to be looked at on a case-by-case basis," he said.
Neither the MRC nor the Wellcome Trust was willing to talk in any detail about the Biobank, saying many issues were to be thrashed out over the coming months.
Sue Mayer, chair of Genewatch UK, a pressure group with concerns about how genetic information is used, said patenting was a major worry.
"As the legislation stands, people don't have the right to be informed about whether their genes are patented. There hasn't been any public consultation over this," she said.
Mayer added that rather than contribute to the sum of human knowledge, the Biobank could allow commercial companies to go "gene fishing" to gain excessive monopolies over future treatments.
The issue of companies' involvements was a concern also raised by members of the public who were involved in a long consultation exercise held by Wellcome and the MRC -- but it was not their over-riding concern. Their main anxiety was over exactly who would have access to the data. They recommended that there be very strict rules ensuring their own doctors could not gain access to personal data.
Also recommended was a mechanism to prevent researchers from identifying individuals.
But the 60 people who took part in the consultative sessions last year ended up saying they would take part in the project on the basis that the research was worthwhile, and that valuable information would come out of the study.
Some of them, it became clear, were motivated by the idea that their initial examination might act as a general, basic health test and that they would be given feedback quickly if they became unwell. This, however, is not something which is guaranteed by the project. They will be told if they have high blood pressure, for example, but they will not receive information that they have a particular gene predisposing them to a particular form of heart disease.
Newton has said that the safeguards written into the resource "go well beyond what is required by law." An independent oversight body is being created to protect all the participants' interests, and the samples and the DNA will be stored under the control of the charity at all times.
Meanwhile, the first calls will go out to middle-aged people around Britain at some point in the New Year under a series of pilot projects. If there is enthusiasm from the volunteers, the full recruitment will begin in 2005. If not, the entire project may have to be shelved.
Will Britain leap toward its new role in the post-genome era, or will the concerns over confidentiality lead to another scientific failure? It will probably boil down to the British public's confidence in scientists -- and at the present time that remains very much under question.
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