JAKARTA - Prenatal tests carried out by millions of pregnant women globally, using test technology developed by Chinese company BGI Group in collaboration with the Chinese military, are being used to collect genetic data, according to a Reuters review of publicly available documents.
The report is the first to reveal that the company is working with China's People's Liberation Army (PLA) to develop and improve the test, which is taken early in pregnancy, as well as the scope of storage and analysis of BGI data. The United States sees BGI's efforts to collect and analyze human gene data as a national security threat.
China's largest genomics company, BGI began marketing the test overseas in 2013. Branded NIFTY, it is one of the best-selling non-invasive prenatal tests (NIPT) in the world. It screens blood samples from pregnant women to detect abnormalities such as Down's syndrome in the developing fetus.
So far more than 8 million women worldwide have taken BGI prenatal testing, the BGI says. NIFTY is sold in at least 52 countries, including the UK, Europe, Canada, Australia, Thailand, and India, but not the United States.
BGI used residual blood samples sent to its laboratory in Hong Kong and genetic data from the test for population studies, the company confirmed to Reuters.
Reuters found genetic data on more than 500 women who took the test, including women in Europe and Asia, were also stored at the Government-funded China National GeneBank in Shenzhen, which the BGI runs.
However, Reuters found no evidence that BGI violated any privacy agreements or regulations. The company said it had obtained signed approvals and destroyed overseas samples and data after five years.
"At this stage during the testing or research process, BGI did not have access to any personally identifiable data," the company said.
However, the test's privacy policy says the data collected can be shared when it is directly relevant to national security or national defense security in China. The BGI said it was never asked to provide or provide data from the NIFTY test to Chinese authorities for national security or national defense purposes.
Meanwhile, responding to a Reuters finding, the US Center for Counter Intelligence and National Security, which had previously warned about Chinese companies collecting health data, said women taking NIFTY tests abroad should pay attention to privacy policies that allow data to be shared with others. Chinese security agency.
"Non-invasive prenatal testing kits marketed by Chinese biotech companies have important medical functions, but they can also provide another mechanism for the People's Republic of China and China's biotech companies to collect genetic and genomic data from around the world," the agency said.
China's Foreign Ministry said Reuters' findings reflected "baseless accusations and slander" from US agencies.
Other companies selling such pregnancy tests are also reusing the data for research. But none operate on the scale of the BGI, scientists and ethicists say, given the BGI's relationship with the government or its track record with the national military.
To note, the BGI began working with Chinese military hospitals to study fetal genomes in 2010 and has published more than a dozen joint studies with PLA researchers to trial and improve its prenatal tests, according to a Reuters review of more than 100 public documents.
The PLA General Hospital in Beijing and the Third Military Medical University in Chongqing ran clinical trials on the NIFTY test in 2011. They worked with BGI researchers to expand genetic abnormalities on the test screen, papers published in 2019 and 2020.
In one example, PLA General Hospital collaborated with BGI in China's first prenatal trial to screen for dwarfism, which BGI later brought to market.
Also, a BGI study published in 2018 used military supercomputers to re-analyze NIFTY data and map the prevalence of the virus in Chinese women, look for indicators of mental illness in them, and select Tibetan and Uighur minorities to find associations between their genes and their characteristics.
In addition to genetic information about the fetus and mother, the testing process captures personal information, such as the customer's country, weight, height and medical history, according to BGI computer code reviewed by Reuters. However, customer names are not collected.
A 32-year-old Polish office administrator who took the test in 2020 was surprised and said that if she had known the data could be shared with the Chinese government, or understood the extent of BGI secondary research, she would have opted for a different test.
"I want to know what happened to sensitive data about me, such as my genome and my son's," said the woman who asked only to be given her first name, Emilia.
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