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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 UK citizens.
The UK Biobank said it had about 300 projects under which researchers in China were accessing “detailed genetic information” or other health data on volunteers.
The anonymised data is shared under an open-access policy for use in studies into diseases from cancer to depression. There is no suggestion it has been misused or participants’ privacy compromised.
Biobank said data was only given to bona fide researchers, who must agree to store it securely and use it for a specified purpose, adding that it has “stringent controls” in place including “rigorous access and ethics checks”.
The data-sharing is facing scrutiny amid a shift in geopolitical relations, with analysts raising concerns about the challenges of monitoring usage beyond UK borders and a lack of reciprocal data-sharing by China.
Biobank said researchers accessing its data were bound by agreements dictating how it could be used and that usage and outputs were “regularly monitored”. But it said relationships relied on trust and that it was not feasible for projects to be overseen closely. Some projects involve the transfer of data to China for projects conducted without UK collaboration.
Professor Jonathan Adams, from the Policy Institute at King’s College London, and co-author of a report analysing UK-China research collaborations, said the data-sharing was “problematic” and questioned how Biobank could police usage.
He said there were “huge potential returns from having a good, positive, open relationship” with China but that current relationships relied “far too much on things like formal agreements, which we believe will protect things in a way they would if we were working with conventional partners”. “China is different. It’s transformed into a public research culture over a very short period, and the norms we expect are not necessarily universally adopted. My concern is that what gets published in English would be the bit above water that you can see,” he said.
