UK Biobank said it had around 300 projects where researchers in China had access to “detailed genetic information” or other health data on volunteers. Anonymized data is shared under an open access policy for use in studies of diseases from cancer to depression. There is no indication that participants’ privacy has been abused or violated. Biobank said the data was only given to bona fide researchers, who must agree to store it securely and use it for a specific purpose, adding that it has “strict controls” in place, including “strict access and ethics controls”. The data sharing comes amid a shift in geopolitical relations, with analysts raising concerns about the challenges of tracking usage across UK borders and the lack of reciprocal data sharing from China. Biobank said researchers who had access to its data were bound by agreements dictating how it could be used, and that use and results were “regularly monitored”. However, he said that relationships are based on trust and that it is not possible to closely supervise projects. Some projects involve the transfer of data to China for projects carried out without the UK’s cooperation. Professor Jonathan Adams, from the Institute of Politics at King’s College London, and co-author of a report analyzing UK-China research partnerships, said data sharing was “problematic” and questioned how Biobank could control use. He said there were “tremendous potential returns from a good, positive, open relationship” with China, but that current relationships are “too much based on things like formal agreements, which we think will protect things in a way that would be protected if we were working with contractual partners”. “China is different. It has become a culture of public inquiry in a very short time, and the rules we expect are not necessarily universally adopted. My concern is that what is published in English will be a bit above water that you can see,” he said. Professor Yves Moreau, a geneticist who has worked on projects using data from the UK Biobank, described the resource as “world-class” and said scientists had a “moral duty” to share the knowledge, but raised concerns about the possibility misuse – such as e.g. researchers linking the data to other datasets – or for the authorities to intervene. “We are completely unprepared for a situation where an institution and national authorities would support the misconduct of the scientist,” he said. “It’s about being careful and looking at the issue to find the right balance so we don’t wake up in 10 years and realize, ‘Oh, what did we do?’ Launched in 2006 to promote open science, the UK Biobank project, part-funded by the Department of Health, stores in-depth genetic and health information on around 500,000 people. Alex Hern’s weekly dive into how technology is shaping our lives Privacy Notice: Newsletters may contain information about charities, online advertising and content sponsored by external parties. For more information, see our Privacy Policy. We use Google reCaptcha to protect our website and Google’s Privacy Policy and Terms of Service apply. Since 2012, approved researchers from around the world can pay £3,000 to £9,000 for access to datasets, including questionnaires and physical measurements. linked health records; and whole genome sequence data. The resulting research produced key information on diseases including cancer and heart disease, as well as critical data on Covid-19. In 2012, the UK government actively encouraged partnerships with China, resulting in a “golden era” of partnerships between 2014 and 2019 that led to initiatives from universities including Oxford. But Beijing’s relationship with the West has soured, with concerns over human rights abuses and aggression in Taiwan and Hong Kong. Last month, the heads of MI5 and the FBI warned of a “game-changing threat” from China’s efforts to steal technology. China denied the allegations and said security services were “spreading all kinds of lies related to China”. Meanwhile, guidance from the UK’s National Infrastructure Protection Centre, published in March, warned that China’s National Intelligence Law – which allows intelligence agencies to compel businesses and individuals to hand over data and assets upon request – could “affect the level of control UK researchers have shared more information with Chinese universities. The Chinese government has explicitly identified health technology, including genomics, as an area of strategic focus, identifying it as a priority in its Made in China 2025 plan. In the US, intelligence officials have alleged that China is collecting genetic data from around the world in an effort to develop the world’s largest biological database. At the same time, China’s health ministry has increased access to data on its citizens by international researchers, citing national security. Dr Joy Zhang, reader in sociology and an expert on China’s science policies at the University of Kent, said: “China is tightening its regulations and it seems so difficult to collect data from China when we generously share our own. This is a legitimate concern in terms of scientific progress.” Many of the studies using Biobank data were paid for by China’s state-run National Natural Science Foundation, which aims to “promote progress in science and technology” and “the harmonious socio-economic development of the nation.” UK Biobank said it shared data with researchers from more than 100 countries under its “fair, transparent and unbiased” open access policy and it was no surprise that researchers from China were included. He added that those who receive data are prohibited from using it to re-identify individuals and are required to report breaches, with no such incidents reported to date. While genetic data derived from the DNA has been shared with researchers in China, physical samples have not, a spokeswoman said. Mark Effingham, Biobank’s deputy chief executive, added that he had not been in direct contact with the government about data sharing, but kept its policies under review. “We actively monitor national security concerns and welcome dialogue with the government on this, while remaining committed to open science and advancing global public health,” he said. “The more scientific research we allow, the more knowledge we gain about disease prevention, diagnosis and treatment.” A UK government spokesman said it wanted to enable “collaborative research” while ensuring national security and data protection, and published guidance on working with international partners to help investigators “manage the risks”.
