DNA database pledges to defend confidentiality

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The Independent Online

The scientist in charge of setting up Britain's DNA databank, which will collect information on the lifestyle, health and genes of 500,000 people, said he will oppose any attempt by police or the courts to gain access to the data.

In an exclusive interview with The Independent, Dr John Newton said strict confidentiality is essential if the UK Biobank project is to enjoy the public confidence it needs to succeed. Three years ago, police forced medical scientists in Edinburgh to hand over the confidential data of another research project to prosecute a volunteer in the study.

Critics of the UK Biobank, which aims to compare the influence of genes and lifestyle on the health of half a million volunteers, says there is nothing to stop this information also being used by the police, employers or insurance companies.

There is no specific legislation in the UK for protecting personal genetic information from insurance companies and employers, and police have special exemption from data protection laws to access medical records in "exceptional circumstances". Dr Newton, the chief executive of UK Biobank, said: "The police would have access to our data only if they had a court order. If a High Court judge ruled it was in the public interest for the police to have access to our data they could have access.

"We would not give police access unless there was a High Court order, and we would actually argue against this as much as we possibly could, which might include taking legal advice and getting our own barristers. We would do everything we could to prevent it. But ultimately if a High Court judge rules that it's in the public interest, one would have to accept that, but it would have be exceptional circumstances."

UK Biobank is among the largest medical projects started in Britain. A total of £61m has been assigned to it by the Government's Medical Research Council and the Wellcome Trust, a private medical research charity. Doctors will soon begin to recruit volunteers, aged between 45 and 69, who will be asked about their health, physical and social environment and lifestyle, as well as giving a blood sample for DNA analysis.

Each man and woman in the study will be closely monitored over 10, 20 or 30 years, and their NHS records will be used to keep track on anyone who moves from one part of the country to another.

"Many of our participants will inevitably develop the common disabling and fatal diseases such as heart disease, cancer, arthritis, dementia and so on," Dr Newton said.

"The biobank data record will allow scientists to look back in time to see how those who became ill differed from those who did not. This in turn will give important clues to the cause of disease, and to specific disease mechanisms. One person's diabetes is not the same as another person's, and the genetic information will help us to match treatment to the person's disease more closely."

With the final completion of the human genome earlier this year, a project to use this information to study illnesses that are influenced by both genes and lifestyle was inevitable, Dr Newton said. "You have to have something like Biobank. It was a conclusion reached in the UK three years ago, and has been reached in countries around the world at about the same time. The most significant thing the volunteers in the study are doing is giving us access to their medical records so we can track their health, with extremely strong safeguards in terms of data security and confidentiality."

Every consultation about UK Biobank has shown people are anxious about the misuse of confidential medical records when they become the raw data of scientists. Helen Wallace, a campaigner for Genewatch UK, said the basis on which the police might be granted access to Biobank UK with a warrant remains unclear.

"Addressing this issue is particularly important because the Government sees the biobank as a pilot study for a national genetic database, potentially including the NHS," Dr Wallace said. "This raises the prospect of future erosions of civil rights, by using DNA collected for medical or research reasons for citizen surveillance or forensic purposes."

But Dr Newton said there were no plans for a national biobank covering the entire population. He also questioned whether the information held on UK Biobank would be of any interest to the police. "People fear police will take a DNA sample from the scene of a crime, do a DNA test on it, then go to Biobank and run that DNA against our 500,000 and say, 'OK, it was you', and fish them out. As far as I understand it, they won't be able to do that. We will not have done the entire DNA sequence of every participant, so we will simply not have the information on the same genetic variables that the police use [for DNA fingerprinting]. It is very difficult to say 'never', but I can't see how Biobank will help police."

Alastair Kent, director of the Genetics Interest Group, agreed. "To some extent it's a red herring," he said. "In theory, it seems a problem but in practice it's not going to be an issue because if the police have got somebody whose identify they want to check they would have to know the name of that person."

Dr Newton said the Medical Research Council and the Wellcome Trust are determined to demonstrate they will vigorously defend the confidentiality of the data collected by UK Biobank. Asked whether he would routinely oppose every application to have access to the information, Dr Newton said: "Yes, absolutely. The arguments would have to be very convincing and our legal advisers have said this is what they would do."