Researchers have called on the government to step in to settle a dispute preventing them from fully exploiting the world’s largest store of human genetic data. The scientists say they are unable to access patients’ data, held by British GPs, despite a decade of requests, and that the refusal is impeding the development of new diagnoses and treatments.
Prof Naomi Allen, chief scientist of UK Biobank, told the Observer it had sequenced genomes of more than 500,000 volunteers and collated a host of other data about them. However, it was still prevented from accessing their primary health care data held by their GPs.
“We have been trying to get our hands on primary care data for a decade now and we have got nowhere,” Allen said. “It is deeply frustrating and shows the government needs to step in to shoulder responsibility so busy GPs don’t have to.
“That data would transform our ability to uncover the causes of so many diseases and help researchers develop new treatments. Getting access to primary care data from GPs would ultimately help the whole world in terms of treating illnesses.”
However, the BMA – which represents the views and rights of doctors – said in 2023 that it was not yet ready to cooperate with UK Biobank. There were concerns about GPs’ workloads and their role as legal controllers of the data. A year later, GPs have not changed their position.
In November the Observer reported that the health information database had been shared with insurance companies by Biobank, despite a pledge it would not be. The data was provided to insurance consultancy and tech companies for projects to create digital tools that help insurers predict a person’s risk of getting a chronic disease.
Allen said at the time that “careful processes” had always been followed: “De-identified health data has been shared because these are bona fide researchers working on health-related research, including looking at what impacts human health and longevity – and that is what our participants signed up to help with.”
UK Biobank, funded from the Wellcome Trust and the Medical Research Council, was set up to create a massive DNA database of British people, information that could unravel the causes of disease and pinpoint treatments. Half a million volunteers aged between 40 and 69 years old provided blood from which their entire genomes were sequenced. Over the past two decades they have had their brains and bodies imaged by MRI scanners, worn monitors to assess activity levels and taken part in cognitive questionnaires.
This anonymised information has been shared with thousands of researchers internationally, helping them predict diseases before standard symptoms appear.
An example is provided by Parkinson’s disease. Researchers, using UK Biobank data, established a link between activity levels in individuals who develop the condition several years later, making it possible to identify those who will get the condition many years earlier than is possible today. “There are drugs now on the market that can help the 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 that have been approved by the FDA to treat early onset Alzheimer’s disease and reduce early cognitive decline.”
Among the myriad files of information about volunteers used to make these breakthroughs are hospital records. However, their GP records cannot be accessed even though these patients have given explicit written consent for their use by scientists. This data provides indications of the very earliest appearance of a symptom of a condition. “The fact we cannot get hold of that data is our number one bugbear,” said Allen.
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However, Dr Katie Bramall-Stainer, chair of the BMA GP Committee, England, said GPs took their responsibilities as controllers of patient data seriously. “If a GP were to pass on data which was then not protected sufficiently … the GP would be held responsible, regardless of whether the patient consented. We are still in the process of exploring with UK Biobank what assurances they can provide to inspire absolute confidence from individual practices. The BMA would not oppose a centralised national solution.”
Today, the average age of a UK Biobank volunteer is about 70. Of these, 15,000 have developed breast cancer; 15,000 have prostate cancer; 10,000 have colorectal cancer and 30,000 have dementia. In total, about 10% of all volunteers have died.
“We have now got a relatively narrow window of opportunity to collect as much information as we can from these remaining individuals to find out what is causing disease in middle and old age,” added Allen. “It is a key priority and getting access to all their health data is going to be crucial. That is why we want to get access to GPs’ data.”
