DNA records to be held on nationwide database

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The Independent Online

A national genetic database, containing the DNA and medical history of around half a million British adults, is to be established to help UK scientists investigate links between genes and inherited illness.

A national genetic database, containing the DNA and medical history of around half a million British adults, is to be established to help UK scientists investigate links between genes and inherited illness.

Ministers want the database to be put in the hands of an independent body to ensure that the police, insurance companies and private firms cannot access the sensitive material.They are discussing plans for a public trust to administer and protect the library of British genes.

The database, which is likely to be set up by the Government's Medical Research Council, would take voluntary donations of individuals' genetic sequences from blood tests or cheek swabs.

Ministers want the information to be restricted to scientists working to decipher the human genetic code to discover links between gene sequences and certain illnesses. But they fear it could be used by the police to link people to the scenes of crimes or sold to insurance companies who could use it to assess whether to grant policies.

Ministers believe that if the information in the genetic bank is abused, threatening the confidentiality of people's DNA, the public would be dissuaded from giving samples.

"I think we may have to move towards some public trust so that people are absolutely sure that the information can only be used for medical research purposes," said Lord Sainsbury, the Science Minister. "We are happy for genetic information to go into a database. We are quite happy that the information be used for research purposes but we are worried that it could be used for other purposes such as police investigations."

The DNA information is expected to be "anonymised" so it cannot be linked to individuals. Genetic sequences will be given voluntarily. But scientists will also need information about individuals' medical history to make links between gene codes and illnesses such as cancer and schizophrenia.

Leading scientists say the formation of the database will hugely boost moves to unravel the human genetic code and find drugs and therapies to cure inherited illnesses.

"It's incredibly important that we have access to this kind of genetic information for research purposes," said Professor Alan Ashworth, director of the Breakthrough Research Centre, which conducts genetic research into cancer. "If there is a central genetic database it's important that the information does not fall into anybody's hands. They will need medical records so it's hard to see how it's going to be totally anonymous."

In Iceland, a company has mapped the genetic background of the population, which has raised questions about the protection of confidential genetic information. In Britain the donations would be voluntary, although people with a history of illness are likely to be asked to contribute.

At the Royal Marsden Hospital in London, which specialises in the treatment of cancer, patients are routinely asked to give blood samples to aid scientists. There is not enough genetic informationavailable for scientists to make links, using computer programs, between specific genes and medical conditions.

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