Fears over China’s access to UK citizens’ genetic data | Medical research

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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 British citizens .

The UK biobank said it has around 300 projects where researchers in China access “detailed genetic information” or other health data about volunteers.

Anonymized data is shared under an open-access policy for use in studies of diseases ranging from cancer to depression. There is no indication that it was misused or that the privacy of participants was compromised.

Biobank said the data is only given to researchers in good faith, who must agree to store it securely and use it for a specific purpose, adding that it has “strict controls” in place. including “rigorous access and ethics controls”.

Data sharing is under scrutiny amid a shift in geopolitical relations, with analysts worrying about the challenges of monitoring usage across UK borders and a lack of reciprocal sharing 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 the relationship was built on trust and it was not possible to monitor projects closely. Some projects involve the transfer of data to China for projects carried out without the collaboration of the United Kingdom.

Professor Jonathan Adams, of the Policy Institute at King’s College London, and co-author of a report analyzing research collaborations between the UK and China, said data sharing was “problematic” and was asked how Biobank could monitor usage.

He said there were “huge potential returns to having a good, positive and open relationship” with China, but that the current relationship relied “far too much on things like formal agreements, which we believe protect things like they would if we were working with conventional partners.” “China is different. It has transformed into a public research culture in a very short time, and the standards we expect are not necessarily universally adopted. My concern is that what is published in English is the little bit above water that you can see,” 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 concerns about the potential for misuse – such as researchers linking the data to other datasets – or for authorities to interfere.

“We are completely unprepared for a situation where an institution and national authorities support the misconduct of the scientist,” he said. “It’s about being vigilant and looking at the problem to find the right balance, so that we don’t wake up in 10 years and realize, ‘Oh, what have we done? “”

Launched in 2006 with the aim of advancing open science, the UK Biobank project, partly funded by the Department of Health, stores in-depth genetic and health information on around 500,000 people.

Since 2012, accredited researchers around the world can 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 on Covid-19.

In 2012, the UK government actively encouraged partnerships with China, leading to a “golden age” of collaborations between 2014 and 2019 that led to initiatives by universities including Oxford.

But Beijing’s relations with the West have soured, with concerns over human rights abuses and assaults 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 the technology. China has denied the claims and said the security services are “spreading all kinds of China-related lies.”

Guidance from Britain’s Center for National Infrastructure Protection, released in March, warned that China’s National Intelligence Act – which allows intelligence agencies to compel companies and individuals to hand over data and assets upon request – could “affect the level of control”. “UK researchers have more information shared with Chinese universities.

The Chinese government has explicitly highlighted health technologies, including genomics, as an area of ​​strategic focus, identifying them as a priority in its Made in China 2025 plan. claimed that China was 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 data on its own citizens by international researchers, citing national security. Dr Joy Zhang, a sociology reader and China science policy expert at the University of Kent, said: “China is tightening up its regulations and it seems so difficult to get data from China, while we generously share ours. . This is a legitimate concern in terms of scientific advancement.

Many studies using Biobank data have been funded by China’s state-funded National Natural Science Foundation, which aims to “promote advances in science and technology” and “socio-economic development”. harmony of the nation”.

The UK Biobank said it shared data with researchers from more than 100 countries as part of its “fair, transparent and non-discriminatory” open access policy, and it was no surprise that Chinese researchers are included therein.

He added that those receiving data were prohibited from using it to re-identify individuals and were required to report breaches, with no such incidents reported to date. While DNA-derived genetic data has been shared with researchers in China, physical samples have not, a spokeswoman said.

Mark Effingham, deputy chief executive of Biobank, added that he had not been contacted directly about data sharing by the government, but had kept its policies under review. “We actively monitor national security concerns and welcome dialogue with the government on this matter, while remaining committed to open science and the promotion of global public health,” he said. “The more scientific research we allow, the more knowledge we get about disease prevention, diagnosis and treatment.”

A UK government spokesperson said it wanted to enable “collaborative research” while ensuring national security and data protection, and had issued guidance on working with international partners to help researchers “manage the risks”.

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