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| DNA data to be shared worldwide in medical research project | DNA data to be shared worldwide in medical research project |
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| Leading medical and research centres around the world are launching an ambitious project that will allow them to share vast amounts of patients' genetic and clinical information. | Leading medical and research centres around the world are launching an ambitious project that will allow them to share vast amounts of patients' genetic and clinical information. |
| More than 60 institutions across the UK, Europe, North America and Asia have agreed to develop the system to "dramatically accelerate medical progress" through greater sharing of medical data, according to a white paper circulated among the centres. | More than 60 institutions across the UK, Europe, North America and Asia have agreed to develop the system to "dramatically accelerate medical progress" through greater sharing of medical data, according to a white paper circulated among the centres. |
| Establishing the system should help unravel the biological bases of cancer, inherited and infectious diseases, and shed light on the variable effects that drugs have in different patients, the document says. | Establishing the system should help unravel the biological bases of cancer, inherited and infectious diseases, and shed light on the variable effects that drugs have in different patients, the document says. |
| Announced today by the Wellcome Trust's Sanger Institute in Cambridge, the Global Alliance will take on the formidable task of drawing up standards for ethics, privacy and technical issues so that anonymised genetic and clinical information can be used more effectively and securely. | Announced today by the Wellcome Trust's Sanger Institute in Cambridge, the Global Alliance will take on the formidable task of drawing up standards for ethics, privacy and technical issues so that anonymised genetic and clinical information can be used more effectively and securely. |
| The project has been likened to the world wide web, which relies on scores of standard procedures to ensure data held on any computer can be shared with others in a seamless fashion. Unlike the web, the Global Alliance project will not be open to the public. | The project has been likened to the world wide web, which relies on scores of standard procedures to ensure data held on any computer can be shared with others in a seamless fashion. Unlike the web, the Global Alliance project will not be open to the public. |
| Medical researchers say the project is urgent because the falling cost of DNA sequencing will soon lead to a flood of genetic information that will be stored in separate information silos and go untapped unless it is held in standard formats and can be shared as simply as possible. | Medical researchers say the project is urgent because the falling cost of DNA sequencing will soon lead to a flood of genetic information that will be stored in separate information silos and go untapped unless it is held in standard formats and can be shared as simply as possible. |
| "We are forming a partnership with a large number of organisations to work on how we can aggregate and share anonymous data on individuals and patients, their genomes and clinical data, to extract knowledge to benefit human health," said Prof Mike Stratton, director of the Sanger Institute. | "We are forming a partnership with a large number of organisations to work on how we can aggregate and share anonymous data on individuals and patients, their genomes and clinical data, to extract knowledge to benefit human health," said Prof Mike Stratton, director of the Sanger Institute. |
| "What has really changed over the past few years is sequencing technology. We can now sequence a million times as much DNA for the same cost as we could ten years ago. But what we're finding is we need to share our data to maximise the knowledge we gain," he added. | "What has really changed over the past few years is sequencing technology. We can now sequence a million times as much DNA for the same cost as we could ten years ago. But what we're finding is we need to share our data to maximise the knowledge we gain," he added. |
| The cost of DNA sequencing has fallen so fast that it will soon be possible to read a person's whole genome for a £650. But a problem scientists face is that to study rare diseases and mutations, or gene variants that raise the risk of a disorder only slightly, they must compare the DNA and clinical records of tens to hundreds of thousands of patients and healthy individuals. | The cost of DNA sequencing has fallen so fast that it will soon be possible to read a person's whole genome for a £650. But a problem scientists face is that to study rare diseases and mutations, or gene variants that raise the risk of a disorder only slightly, they must compare the DNA and clinical records of tens to hundreds of thousands of patients and healthy individuals. |
| "No single hospital, research group or even country alone is going to be able to collect all the data that will be needed to inform medicine and science, But if we're able to look across datasets, we'll have greater progress, and we'll be able to offer people better information," said David Altschuler, deputy director of the Broad Institute at Harvard and MIT in Boston. | "No single hospital, research group or even country alone is going to be able to collect all the data that will be needed to inform medicine and science, But if we're able to look across datasets, we'll have greater progress, and we'll be able to offer people better information," said David Altschuler, deputy director of the Broad Institute at Harvard and MIT in Boston. |
| Prof Sir John Burn at the Institute of Genetic Medicine at Newcastle University, acknowledged the project was a "huge challenge", but one that had to be solved to make proper use of genetic data in future. "There are hundreds of thousands of people walking the streets of Britain with single gene defects predisposing them to early onset cancer and heart disease that we could do something about if only we knew the defects were there," he said. | Prof Sir John Burn at the Institute of Genetic Medicine at Newcastle University, acknowledged the project was a "huge challenge", but one that had to be solved to make proper use of genetic data in future. "There are hundreds of thousands of people walking the streets of Britain with single gene defects predisposing them to early onset cancer and heart disease that we could do something about if only we knew the defects were there," he said. |
| "We recently intercepted a young woman who was about to have a mastectomy because of a genetic mutation which we've now shown isn't a problem," Burn said. "There's constant development in our knowledge, and we need a way to come back to patients when we realise what we've told them before was wrong." | "We recently intercepted a young woman who was about to have a mastectomy because of a genetic mutation which we've now shown isn't a problem," Burn said. "There's constant development in our knowledge, and we need a way to come back to patients when we realise what we've told them before was wrong." |
| A major challenge for the Global Alliance is to develop a system that inspires patient confidence, and is flexible enough to work with different levels of access to medical data. For example, some universities release genetic data into public databases, while the NHS keeps its patient records and clinical data behind a firewall, but allows bona fide researchers to request information from the records. | A major challenge for the Global Alliance is to develop a system that inspires patient confidence, and is flexible enough to work with different levels of access to medical data. For example, some universities release genetic data into public databases, while the NHS keeps its patient records and clinical data behind a firewall, but allows bona fide researchers to request information from the records. |
| So far, more than sixty leading institutes have signed up to the Global Alliance, including the Sanger Institute, Cancer Research UK, the US National Institutes of Health, the National Cancer Center in Japan, France's National Cancer Institute, and centres in Australia, Canada, Germany and elsewhere. | So far, more than sixty leading institutes have signed up to the Global Alliance, including the Sanger Institute, Cancer Research UK, the US National Institutes of Health, the National Cancer Center in Japan, France's National Cancer Institute, and centres in Australia, Canada, Germany and elsewhere. |
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