Fears over China’s access to genetic data of UK citizens

There have been calls for a review of the transfer of genetic data from the UK to China due to rising political and security tensions.

The UK Biobank said it had about 300 projects in which researchers in China were looking at volunteers' health data.

Under an open-access policy, the data is shared for use in studies into diseases. There is no evidence that it has been used.

The data was only given to researchers who agreed to store it securely and use it for a specific purpose, according to the biobank.

The data-sharing is under scrutiny because of a shift in relations between the UK and China.

Researchers accessing its data were bound by agreements that dictated how they could use it. It said that it wasn't feasible for projects to be closely monitored. The transfer of data to China is one of the projects that involves it.

Professor Jonathan Adams, from the Policy Institute at King's College London, and co-author of a report analyzing UK-China research collaborations, said the data-sharing was problematic.

He said there were huge potential returns from having a good, positive, open relationship with China, but that current relationships relied too much on formal agreements, which would protect things in a way they would if we were working with conventional partners. China is not the same as the rest of the world. Over a short period of time, it has become a public research culture. He is concerned that what is published in English will be above water.

Professor Yves Moreau, a geneticist who has worked on projects using data from UK Biobank, described the resource as "world-class" and said scientists had a "moral duty" to share knowledge, but raised concerns about the potential for misuse

He said that they were not prepared for a situation where the institution would support the scientist's actions. It's about looking into the issue to find a proper balance so we don't wake up in 10 years and wonder what we did.

The UK Biobank project is partly funded by the Department of Health and contains in-depth genetic and health information on about 500,000 people.

In the last four years, approved researchers from around the world have been able to pay thousands of dollars for access to a wide range of data. Key insights into diseases like cancer and heart disease have been produced by the research.

In 2012 the UK government encouraged partnerships with China, which resulted in a "golden age" of collaboration between the two countries.

Concerns over human rights abuses and aggression in Taiwan have soured Beijing's relationship with the west. The heads of MI5 and the FBI warned last month of a "game-changing threat" from China. The security services were spreading all kinds of China-related lies, according to China.

China's National Intelligence Law, which allows intelligence agencies to force businesses and individuals to hand over data and assets on request, could affect the level of control.

The Chinese government identified health tech as a priority in its Made in China plan. Intelligence officials in the US claim that China is trying to develop the world's largest bio-database by gathering genetic data from around the world. The Chinese health ministry tightened access to its own citizens' data due to national security. Dr Joy Zhang, a reader in sociology and expert in China's science policies at the University of Kent, said: "China is tightening its regulations and it seems to be so hard to get data from China, when we're generous sharing ours." That is a legitimate concern.

The National Natural Science Foundation of China paid for many of the studies using Biobank data.

The UK Biobank said it shared data with researchers from more than 100 countries under its "equitable, transparent and non-discriminatory" open-access policy.

Those who receive data are not allowed to use it to re- identify individuals and are required to report any breeches. Physical samples have not been shared with researchers in China.

Mark Effingham said that it had not been contacted directly about the data-sharing by the government but kept its policies under review. He said that they monitor national security concerns and welcome dialogue with the government on this. The more scientific research we can do, the better.

The UK government has published guidance on collaborating with international partners to help researchers manage risks.