Fears of China’s Access to British Citizens’ Genetic Data | medical research

The escalating political and security tensions between Beijing and the West prompted a review of the transfer of genetic data to China from a biomedical database containing the DNA of 500,000 British citizens.

UK Biobank says researchers in China have about 300 projects that access detailed genetic information or other health data about volunteers.

Anonymous data is shared under our public access policy for use in research on diseases ranging from cancer to depression. There is no indication that it has been misused or that a participant’s privacy has been violated.

Biobank added that it only provided data to bona fide researchers who had to give consent to store data securely and use it for specific purposes, and it has strict controls in place, including strict access and ethics checks, he added.

Data sharing is facing scrutiny amid shifting geopolitical relations, and analysts are raising concerns about usage monitoring across UK borders and China’s lack of mutual data sharing.

Biobank said it is bound by a contract that directs researchers who access data to monitor how it is used and regularly monitor usage and output. However, he said that relationships depend on trust and that close supervision of the project is not feasible. Some projects involve the transfer of data to China from projects done without UK cooperation.

Jonathan Adams, a professor at the Policy Institute at Kings College London and co-author of a report analyzing UK-China research collaborations, said data sharing is problematic and questioned how Biobanks can monitor usage.

He said there have been huge potential gains from having a positive and open relationship with China, but the current relationship relies too much on things like formal agreements. . China is different. It has transformed into a public research culture in a very short period of time, and the norms we expect are not necessarily universally adopted. My concern is that publishing in English will be a little higher than the water you can see, he said.

Professor Yves Moreau, a geneticist who worked on the project using data from the UK Biobank, explained that the resource is world-class, and that while scientists have a moral obligation to share their knowledge, the data cannot be tampered with by other datasets or authorities. there is.

He said institutions and national authorities were not prepared at all for situations where they were supporting the misconduct of scientists. It’s about being careful and investigating problems to find the right balance. So we don’t wake up in 10 years, ah, what have we done?

Launched in 2006 to advance open science, the UK Biobank project, funded in part by the Ministry of Health, stores in-depth genetic and health information for approximately 500,000 people.

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Since 2012, approved researchers around the world have been able to pay between $3,000 and $9,000 to access data sets, including questionnaires and physical measurements. linked health records; and whole genome sequence data. The resulting study yielded key insights into diseases, including cancer and heart disease, and important data on Covid-19.

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

However, relations between China and the West have deteriorated due to concerns about human rights violations and aggression in Taiwan and Hong Kong. Last month, MI5 and FBI directors warned that China’s attempts to steal technology would pose a game-changing threat. China denies these allegations and says security officials are spreading all kinds of lies about China.

Meanwhile, guidance from the UK Center for Protection of National Infrastructure, released in March, said that China’s National Intelligence Law, which allows intelligence agencies to hand over data and assets to companies and individuals upon request, is a requirement for British researchers. It warns that the level of control may be affected. Through information shared with Chinese universities.

The Chinese government has explicitly highlighted health technologies, including genomics, as strategic areas of focus, making it a priority for the Made in China 2025 plan. US intelligence officials have claimed that China is collecting genetic data from around the world to develop the world’s largest biodatabase. At the same time, China’s Ministry of Health has strengthened access to national data by international researchers for national security reasons. Dr Joy Zhang, a sociology reader at the University of Kent and an expert on Chinese science policy, said: That is a legitimate concern in terms of scientific progress.

Many studies using Biobank data have been paid for by the National Natural Sciences Foundation of China, which aims to promote the advancement of science and technology and the harmonious socio-economic development of the country.

UK Biobank has shared data with researchers in more than 100 countries in accordance with its fair, transparent and non-discriminatory open access policy, and it is not surprising that researchers from China are included.

Recipients of the data are prohibited from using the data to re-identify individuals and must report violations, he added. To date, no such incident has been reported. Genetic data derived from DNA was shared with researchers in China, but not physical samples, the spokesperson said.

Biobank’s vice president, Mark Effingham, added that although he had never been contacted directly by the government about data sharing, he was still reviewing the policy. “We are committed to open science and promote global public health while actively monitoring national security concerns and welcoming dialogue with governments on these,” he said. The more scientific research available, the more insight we can gain into the prevention, diagnosis and treatment of disease.

A UK government spokesperson said it has issued guidelines for working with international partners to enable collaborative research and help researchers manage risk, while ensuring national security and data protection.

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