Rising political and security tensions between Beijing and the West have prompted calls for a review of the transfer of genetic data to China from a biomedical database containing the DNA of half a million of the Kingdom’s citizens united
The UK Biobank said it had around 300 projects where researchers in China accessed “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 suggestion that participants’ privacy has been misused or compromised.
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” including “access rigorous and ethical controls”.
Data sharing is facing scrutiny amid a shift in geopolitical relations, with analysts raising concerns about the challenges of policing use beyond the UK’s borders and the lack of sharing reciprocal data from China.
Biobank said researchers accessing its data were bound by agreements dictating how it could be used and that use and results were “regularly monitored”. But he said relationships were based on trust and it was not feasible for projects to be closely monitored. Some projects involve the transfer of data to China for projects carried out without UK collaboration.
Professor Jonathan Adams, of the Policy Institute at King’s College London and co-author of a report looking at research collaborations between the UK and China, said data sharing was “problematic” and questioned as Biobank could control the use.
He said there were “huge potential returns from having a good, positive, open relationship” with China, but that current relations depend “too much on things like formal agreements, which we think will protect things in a way that they would if we worked.” with conventional partners”. “China is different. It has been transformed into a public research culture in a very short period, and the norms that we expect are not necessarily universally adopted. My concern is that what is published in English is the piece over water that can be seen,” he said.
Professor Yves Moreau, a geneticist who has worked on projects using UK Biobank data, described the resource as “world-class” and said scientists had a “moral duty” to share knowledge, but raised the concerns about the potential for misuse, such as researchers linking the data to other data sets, or for authorities to interfere.
“We are totally unprepared for a situation where an institution and national authorities support the scientist’s misconduct,” he said. “It’s about being mindful and researching 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 with the aim of promoting 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 advertisements and content funded by third 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 have been able to pay between £3,000 and £9,000 to access datasets, including questionnaires and physical measurements; linked health records; and whole genome sequence data. The resulting research has produced key insights into diseases such as cancer and heart disease, as well as crucial data about Covid-19.
In 2012, the UK government actively encouraged partnerships with China, leading to a “golden age” of collaboration between 2014 and 2019 that led to initiatives by universities such as 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 claims and said the security services were “spreading all kinds of lies related to China”.
Meanwhile, guidance from the UK’s Center for the Protection of National Infrastructure, published in March, warned that China’s National Intelligence Law, which allows intelligence agencies to compel companies and people to hand over data and assets on demand, could “affect the level of control”. UK researchers have more information shared with Chinese universities.
The Chinese government has explicitly highlighted health technology, including genomics, as an area of strategic focus, identifying it as a priority in its Made in China 2025 plan. In the United States, intelligence officials have claimed 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 tightened access to its own citizens’ data by international researchers, citing national security. Dr Joy Zhang, Reader in Sociology and an expert on China’s science policy at the University of Kent, said: “China is tightening its regulations and it seems to be very difficult to get data from China, when we generously share our . This is a legitimate concern in terms of scientific progress.”
Many of the studies using Biobank data were paid for by China’s state-funded National Natural Science Foundation, which aims to “promote progress in science and technology” and “the harmonious socio-economic development of the nation” .
The UK biobank said it shared data with researchers in more than 100 countries under its “fair, transparent and non-discriminatory” open access policy and was not surprised that researchers in China were included .
He added that those who receive data are prohibited from using it to re-identify people and are required to report breaches, with no such incidents reported so far. While genetic data derived from the DNA has been shared with researchers in China, the physical samples have not, a spokeswoman said.
Mark Effingham, Biobank’s deputy chief executive, added that the government had not contacted him directly about data sharing, but kept its policies under review. “We actively raise national security concerns and welcome dialogue with government about them, while remaining committed to open science and promoting 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 has published guidance on working with international partners to help researchers to ” manage risks”.