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Mr. Davey: At this late hour, it is a joy to be able to welcome the Paymaster General's positive assurances on this point. I shall, in a moment, seek the leave of the

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House to withdraw the new clause, as she has given such a positive reply—[Interruption.] The House gives its blessings to the hon. Member for Arundel and South Downs (Mr. Flight).

I am sure that members of the Low Incomes Tax Reform Group, for example, will read the Paymaster General's words with pleasure. If they can assist her officials in any way, I am sure that they would be delighted to do so.

Dawn Primarolo indicated assent.

Mr. Davey: I am grateful to the Paymaster General for nodding her assent. Because of her warm words and promises, I will not quibble with the points that she made against the new clause. I beg to ask leave to withdraw the motion.

Motion and clause, by leave, withdrawn.

Further consideration adjourned.—[Derek Twigg.]

Bill, not amended in the Committee and as amended in the Standing Committee, to be further considered tomorrow.




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12.25 am

Mr. William Cash (Stone): I have the honour to present a petition on behalf of no fewer than 1,500 residents of Cheadle, Staffordshire. The petition, which is signed by Bill Allan of the Cheadle Conservative club and Councillor Stephen Ellis, declares that the

To lie upon the Table.

Rush Green Surgery

Mr. Andrew Rosindell (Romford): I wish to present a petition on behalf of my constituents in the Rush Green district of Romford who are desperately concerned at the proposal to close a local doctor's surgery.

The petition states:

To lie upon the Table.

3 Jul 2002 : Column 363

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Motion made, and Question proposed, That this House do now adjourn.—[Derek Twigg.]

12.27 am

Dr. Ian Gibson (Norwich, North): The research proposal called Biobank seeks to make available the DNA of 500,000 volunteers to researchers in the United Kingdom who want to investigate disease processes. It represents the concerted effort of the Medical Research Council, the Wellcome Trust and the Department of Health to apply the knowledge gained through the human genome project to concrete insights into human health and illness.

The discussion about Biobank resembles many other debates about science in general. On one side of the controversy are the enthusiasts who get carried away by their admiration for and excitement about new scientific findings. I guess that I would put myself on that side of the argument. On the other side of the divide are those who often get immensely worried about the implications that this new knowledge has for society. Hearing the word "genetics" makes them think of exploitation, commercialisation and discrimination.

It is worth while reminding ourselves of the words of my right hon. Friend the Prime Minister in his much-reviewed recent "science speech". He said:

I take issue with some of the assumptions that were expressed in his speech—his blurring of science and business and his misconception of the crisis of trust—but his general insistence that scientific knowledge is not good or bad per se is spot on and right.

Biobank is an example of what the Prime Minister was referring to. It will help us to increase knowledge and we, as politicians, must make sure that the framework is right for the use of this knowledge. We have to make sure that "evil people"—in the Prime Minister's terminology—cannot use it for "evil ends" or that—this is more likely—well-meaning, decent people do not end up doing damaging things because they have not done enough to think through the consequences of their actions.

The debate should be about a framework to safeguard the proper and secure use of all the new knowledge that Biobank generates. I am sure the Minister will clarify some of the thinking on the issues that I raise. I think that the Department of Health is considering them, but nothing has been decided. We need public and parliamentary dialogue on what the Department is thinking. It is putting much money into Biobank and will recruit its volunteers through GP surgeries. The findings based in Biobank will have profound implications for the national health service, and thus for the Department and all of us.

The project needs to be conducted and organised by experts, but such an important and unprecedented step must not be taken without parliamentary scrutiny and a wider public debate. Scientific knowledge, and the knowledge generated through Biobank is one example of that, is not gained in a vacuum. The insights that scientists have, and even more so their application, depend on the

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institutional framework and the regulatory regime under which science takes place. We need to get the framework right to achieve the benefits from Biobank that we all hope for and to prevent abuses and negative consequences.

I do not have time to go through all the detailed discussions, so I shall tackle one or two of the major issues. Once Biobank is launched, GPs will recruit 500,000 volunteers aged between 45 and 69. That group has been chosen because people in it are most likely to come down with serious and/or chronic diseases. The problem with the sample is, however, that those people and their bodies are already the outcome of a complicated interaction between genetic make-up and environmental factors. If Biobank is really about investigating the genetic versus the environmental impact on health outcomes, the chosen sample will lead to dubious methodology.

The problem with taking on an older group is that we have to rely on their recollection of what risk factors they might have been exposed to. It seems dubious methodology to ask 50-year-olds what they had for dinner in their childhood or whether their mums were overweight when they were young. Similarly, relying on patient records can be difficult, especially with older records. For example, the viral infection someone had as a child might not be included in a patient's record. Some epidemiologists believe that Biobank should have tried to recruit newborns, which would lead to more problems of consent and confidentiality.

Sampling adults and using their genetic information vis à vis their patchy recollections of past behaviour and exposure to environmental risks will make it difficult to disentangle genetic and environmental factors, which will have important implications for the findings of Biobank. I think it will skew towards over-emphasising the genetic influence on disease processes because it is the only thing on which Biobank will provide hard data. Biobank will facilitate a comparison between detailed genetic data and crude environmental information, and genetic factors will probably seem more important for disease processes as their influence can be shown more clearly. That bias will have important consequences for public health policies.

If the data that flow from Biobank over-emphasise the genetic influence on health outcomes, then public health policy might over-emphasise individualised rather than population-based approaches to public health. The World Health Organisation said:

Let us take the example of obesity. Nearly two thirds of men and more than half the women in England are overweight or obese, and obesity is continuing to rise faster here than in most other European countries. At the current rate of increase, more than one in four adults will be obese by 20l0 and they will be at a higher risk of a range of major health problems, including heart disease and adult-onset diabetes. That is obviously not due to an increase in the genes responsible for obesity, but unhealthy diets and lack of exercise, problems that the Government are tackling. Too much emphasis on susceptibility genes for obesity could lead to the underlying causes of the epidemic being ignored and to the growing sale of diet or anti-cholesterol pills to the genetically susceptible instead.

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The data that flow from Biobank need to be balanced with a clear commitment to population-based public health approaches and a strong emphasis on tackling health inequalities; otherwise the genetic tests that flow from Biobank research will increase, not decrease, health inequalities. That would make most of us less, not more, healthy.

We hear that there is a crisis too in the public trust in scientific knowledge and expertise. Indeed, the Prime Minister picked up on that point in his dramatic speech. The success of research, and in particular of Biobank, greatly depends on that public trust. Trust can only stem from knowledge, transparency and democratic control. That is why it is so important that we publicly discuss and make decisions on the many legal and political implications of Biobank before we run into the first major controversy. If we have learned one thing from any of the past science scare stories, it is that we must disengage the conflict and disagreement about the direction and use of research.

We must address questions of consent, for example. What do volunteers participating in Biobank consent to? Does their consent embrace any type of research? Should the use of Biobank be limited to research into serious disease processes? Should the participants have a say in what they want their DNA sample to be used for?

There is, of course, the pressing problem of confidentiality. Is it wise to leave the collecting, encoding and researching of DNA samples in the hands of those who are keen on doing research? Should the encoding of data to render them anonymous be done by an independent third party? What about conflicting interests? Do not we need to make sure that those who approach possible volunteers do not have an interest in the research, and that those who do the research do not turn out to have commercial interests in the application of these biosciences?

That leads me to commercialisation. The founders of Biobank make it clear that no one will have exclusive access to the material stored at Biobank. But what about the findings published through the research? Will companies be able to apply for patents? Do volunteers know that their DNA might lead to a patent? Several models could be used. Companies could be charged for using Biobank and then they could keep whatever money they might make on the basis of Biobank; or companies could not be charged, or they could be charged less, and Biobank would get a share of whatever profits are generated on the basis of its resources. If Biobank got a share of people's profits, it might lose its independence and have a vested interest in a certain type of commercially targeted research.

Either way, private companies will certainly try to capitalise on the knowledge established through Biobank. The likely outcome of the research, at least in some cases, will be the development of drugs or tests for individuals with certain genetic problems. Again, that has public health and cost implications. The NHS has to decide whether to make those new technologies available.

The current set-up of Biobank means that the NHS will be bounced into focusing on new health technologies rather than on public health messages that might come from such a large-scale study. The notion of knowledge transfer must not only apply to commercially applicable bits of genetic information, but must be used in a

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politically intelligent way. Knowledge established through Biobank must lead not only to patents and drugs, but to better health policies.

To address all those problems, we need to establish a solid and trusted framework of regulation, control and ownership of Biobank. So far we have learned from the three funding partners of Biobank—the MRC, the Wellcome Trust and the Department of Health—that there will be an independent oversight body that will steer and control the use of Biobank as a resource for researchers in the UK. I cannot stress enough how important it is that we get that structure right.

One thing has to be clear from the outset: we will not be able to establish trust behind closed doors. The discussions about the design of Biobank have to come out of the closet and into the open. We need an open-ended, democratic debate about how to conduct this research and about how to make it safe. That may include strict rules about what to do when things go wrong. What if a leak occurs and highly personal data end up in places where they should not? We need methods of redress and clear accountability structures. We may also need legal protection against genetic discrimination. That may be particularly important if Biobank is a pilot project for a national genetic database or an NHS-wide patient records system.

The participants in Biobank should have a high degree of ownership over the project. There could be participants' panels, probably at each of the regional centres. The panels should be independent of parties that have an interest in performing the research, and of the funding bodies for Biobank. They could make decisions about general guidelines and individual research proposals, and investigate consent procedures and secure the confidentiality of all those concerned. There should be an overall majority of so-called lay people, or at least people without vested interests, on that oversight body.

To some extent, that would mean that the Wellcome Trust and other bodies that finance the research would have to let go. If that happened, Biobank could become a model for regulation and participation in medical research. So far, the Department of Health has not come clean about those issues, but if we do not get the framework right, there will be no benefit to science, the project could be harmed, and the relationship between science and the public could be ruined even further. We can do better than that, and I hope that the Minister will not duck the issues. He must start to engage with Parliament and the wider public and tell us how we will take forward what I believe will be an exciting piece of research.

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