\n<\/p>\n
With the revelation that the confidential health records of half a million British volunteers have been put up for sale on a Chinese website, we take a look at what the UK Biobank project has achieved \u2013 and why concerns have been raised.<\/p>\n
The UK Biobank was launched in 2003. Between 2006 and 2010 it recruited half a million participants aged 40 to 69. They provided genetic data, clinical measurements, health information, biological samples and lifestyle data, and undergo regular follow-ups.<\/p>\n
This means the UK Biobank has become an important resource for researchers who, since 2012, have been able to request access to anonymised data in order to examine the causes, prevalence and treatment of myriad diseases.<\/p>\n
Thousands of research papers have been published based on UK Biobank data.<\/p>\n
Prof Andrew Morris, the director of HDR UK \u2013 the national institute for health data science \u2013 said that among the key discoveries was the finding that four proteins in the blood could eventually help diagnose dementia in people before symptoms develop.<\/p>\n
Last year the project celebrated having scanned the brains, hearts and other organs of 100,000 participants \u2013 an endeavour it is hoped will aid earlier detection and treatment of diseases and provide new insights into human ageing.<\/p>\n
Such scans have already led to revelations, including that consuming even small quantities of alcohol is associated with changes to the size and structure of the brain, that diabetes can affect the structure of the heart, and that Covid-19 infections appear to damage the brain\u2019s \u201csmell centre\u201d.<\/p>\n
In recent months alone UK Biobank data has given rise to research that has suggested air pollution can accelerate the onset of a host of diseases, and it been used to help train an AI tool that can predict a person\u2019s risk of more than 1,000 diseases.<\/p>\n
However, Morris said the real achievement of UK Biobank had been the assembly of biosamples and data linked at scale for hundreds of thousands of participants.<\/p>\n
\u201cIt is among the largest studies for imaging, protein biomarkers, genomics and more,\u201d he said. \u201cBut not only that \u2013 it links all this together for investigation. The depth of research enabled by this across all disease areas is really unique and why it is heralded worldwide.\u201d<\/p>\n
On Thursday it was revealed that data belonging to UK Biobank participants was up for sale on three separate listings on the Chinese website Alibaba last week. At least one of the listings is thought to have contained data from all 500,000 volunteers. In all cases the data was \u201cde-identified\u201d, meaning names, addresses or precise dates of birth were not included.<\/p>\n
While the records have since been removed, and no sales are thought to have been made, it is not the first time data protection concerns have been raised.<\/p>\n
Last month the Guardian revealed numerous instances of participant health data being leaked online by researchers, which in some cases could be traced back to volunteers.<\/p>\n
Prof Luc Rocher, of the Oxford Internet Institute at the University of Oxford, said the listings on Alibaba marked the 198th known exposure of UK Biobank data since last summer. \u201cUK Biobank data is not just available for sale, it also remains available online for anyone to download today,\u201d they said.<\/p>\n
Prof Rory Collins, the chief executive and principal investigator of UK Biobank, has written to participants to reassure them that their personal identifying information in UK Biobank is \u201csafe and secure\u201d.<\/p>\n
Collins said new security measures would be put in place, including restricting the size of files that can be exported from UK Biobank research platform by researchers in an attempt to \u201cseverely limit\u201d their ability to export any de-identified participant data.<\/p>\n
\u201cIn addition, we will conduct a comprehensive and forensic board-led investigation of this incident,\u201d he wrote.<\/p>\n
Experts have welcomed the swift removal of the listings from Alibaba.<\/p>\n
Prof John Gallacher of the University of Oxford said: \u201cAs a \u2018Biobanker\u2019 I am reassured that the value of my small contribution to global health is jealously guarded.\u201d<\/p>\n
However, some have called for an investigation.<\/p>\n
Morris said: \u201cIt is important that there is a full review.\u201d He added that the trust of participants in how their data was handled was crucial to health research that used large de-identified datasets.<\/p>\n
\u201cThe future of healthcare is increasingly data-dependent,\u201d he said. \u201cWe must double down on implementation of secure systems to enable essential research that is responsible, trusted and can operate at scale.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"
With the revelation that the confidential health records of half a million British volunteers have been put up for sale on a Chinese website, we take a look at what the UK Biobank project has achieved \u2013 and why concerns have been raised. What is the UK Biobank project? The UK Biobank was launched in<\/p>\n","protected":false},"author":1,"featured_media":48702,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[51],"tags":[22578,2974,4493,370],"class_list":{"0":"post-48701","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-health","8":"tag-biobank","9":"tag-concerns","10":"tag-privacy","11":"tag-project"},"_links":{"self":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/48701","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=48701"}],"version-history":[{"count":0,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/posts\/48701\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=\/wp\/v2\/media\/48702"}],"wp:attachment":[{"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=48701"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=48701"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/naijaglobalnews.org\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=48701"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}