Tens of thousands of NHS patients are to be invited to donate their DNA for research as part of a project that aims to make the use of genetic data routine in the health service.
About 40,000 patients patients with cancer and rare diseases will have their genomes sequenced during the four-year project, which David Cameron claims will transform how serious diseases are diagnosed and treated.
Cancer patients will have DNA from healthy and cancerous tissues read so that doctors can work out which mutations are driving the growth of their tumour cells. The information could help medical teams decide which drugs will be most effective in a patient, but will also identify groups for targeted trials of new therapies.
Beyond cancer, the 100,000 Genomes Project hopes to improve diagnoses of rare diseases caused by genetic mutations. Though rare individually, they take a huge collective toll on public health. More than 5,000 rare diseases, which affect more than 3 million people in the UK, have been identified.
Rare diseases are often spotted in children, but to diagnose a condition the project will read the DNA of the patient and both parents.
The project aims to have sequenced 100,000 genomes by 2017, but the Guardian understands that Cameron intends to extend the project beyond that date and to broaden its reach to other diseases.
The prime minister is expected to announce a package of deals on Friday worth £300m, including a contract with the California-based firm Illumina to provide the machines to sequence human genomes. The first few hundred patients have already donated DNA in pilot projects in London, Cambridge and Newcastle.
“This agreement will see the UK lead the world in genetic research within years,” Cameron said in a statement. “As our plan becomes a reality, I believe we will be able to transform how devastating diseases are diagnosed and treated in the NHS and across the world.”
The NHS has begun selecting a series of genomic medicine centres that will take samples from consenting patients and forward them to a laboratory to receive samples from patients from January 2015.
“This is really one of those turning points,” said Jeremy Farrar, director of the Wellcome Trust. “We’ll look back in 20 years’ time and the thought of blockbuster chemotherapy that gave you all those side-effects and adverse events will be a thing of the past.”
Patients who donate DNA must sign a consent form to allow academics, doctors and industry access to data. Any relevant information that comes from the sequencing is passed immediately to the patient’s doctor, but medical researchers or pharmaceutical companies must pass an ethical review and have their research approved before they can gain access. No raw genome data can be taken away from the database, and information that identifies a patient will only be made available to doctors treating the person in question.
Patients on the DNA database are not guaranteed anonymity, though Genomics England, the company set up by the Department of Health to run the project, said that security measures would make it easier to identify patients through other routes.
Ross Anderson, a security expert at Cambridge University, cautioned that genomic information is far more sensitive than the kinds of details people freely share on Facebook and reveal to supermarkets in their buying habits.
“Genetic data does not become less valuable over time but more valuable; we don’t really know yet what parts of it are sensitive, though we learn more over time; and finally, it’s shared with relatives,” he said. “Anybody who says they can protect the privacy of your genomic data by anonymising it is mistaken.”
• This article was amended on 1 August 2014 to correct the number of patients will have their genomes sequenced.
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