Researchers have called on the government to intervene to settle a dispute that has prevented them from fully exploiting the world’s largest repository of human genetic data. The scientists say they have been denied access to patient records held by British GPs despite a decade of requests, and that the denial is hampering the development of new diagnoses and treatments.
Prof Naomi Allen, Chief Scientist at UK Biobank, told the Observer it had sequenced the genomes of over 500,000 volunteers and collected a wealth of other data about them, but it still did not have access to their primary health care data held by their GPs.
“We’ve been trying to get primary care data for 10 years and we’ve gotten nowhere,” Allen said. “It’s incredibly frustrating and shows that the government needs to take responsibility so that busy GPs don’t have to.
“That data would transform our ability to discover the causes of so many diseases and help researchers develop new treatments. Access to GP data would ultimately help the world treat diseases.”
However, the BMA, which represents doctors’ views and rights, said in 2023 that it was not ready to work with UK Biobank. There were concerns about GPs’ workload and their role as legal custodians of the data. A year later, GPs have not changed their position.
In November the Observer reported that Biobank’s database of health information had been shared with insurance companies, despite a promise that this would not happen. The data was provided to insurance consultancies and technology companies for projects to create digital tools that help insurers predict a person’s risk of developing a chronic disease.
Allen said at the time that “careful procedures” had always been followed: “Anonymised health data was shared because these are bona fide researchers working on health-related research, including investigating what influences human health and longevity – and that is what our participants signed up to help with.”
UK Biobank, funded by the Wellcome Trust and the Medical Research Council, was set up to create a vast DNA database of British people, information that could help unravel the causes of diseases and point to treatments. Half a million volunteers, aged 40 to 69, provided blood from which their entire genomes were sequenced. Over the past two decades, their brains and bodies have been imaged by MRI scanners, they have worn monitors to assess their activity levels, and they have taken part in cognitive questionnaires.
This anonymized information has been shared with thousands of researchers worldwide, allowing them to predict diseases before standard symptoms appear.
One example is Parkinson’s disease. Researchers using UK Biobank data have found a link between the activity levels of people who develop the condition several years later, making it possible to identify those who will develop the condition many years earlier than is currently possible. “There are now drugs on the market that can help with early symptoms of Parkinson’s, so there are benefits for patients,” Allen said. “In addition, researchers have found a pattern of proteins that can predict the development of dementia up to 10 years in advance, and there are now at least two drugs approved by the FDA to treat early-onset Alzheimer’s and reduce early cognitive decline.”
Among the many files of volunteer information used to make these breakthroughs are hospital records. Their family doctor records are inaccessible, even though these patients have given explicit written consent for scientists to use them. These records provide clues to the earliest appearance of a symptom of a disease. “The fact that we can’t get that data is our biggest frustration,” Allen says.
after newsletter promotion
However, Dr Katie Bramall-Stainer, chair of the BMA GP Committee in England, said GPs took their responsibilities as custodians of patient data seriously. “If a GP passed on data that was not adequately protected at the time … the GP would be held responsible, regardless of whether the patient gave consent. We are still exploring with UK Biobank what safeguards they can provide to give absolute confidence to individual practices. The BMA would not oppose a centralised national solution.”
Today, the average age of a UK Biobank volunteer is around 70. Of these, 15,000 have developed breast cancer; 15,000 prostate cancer; 10,000 colorectal cancer; and 30,000 dementia. In total, around 10% of all volunteers have died.
“We now have a relatively short window to gather as much information as possible from these remaining individuals to understand what is driving the disease in middle and old age,” Allen added. “It’s a top priority and getting access to all their health data is critical. That’s why we want to get access to GP data.”