Chinese gene company using prenatal tests to harvest data from millions of women

BGI says it stores and re-analyzes left-over blood samples and genetic data from the prenatal tests, sold in at least 52 countries to detect abnormalities such as Down’s syndrome in the fetus. The tests – branded NIFTY for “Non-Invasive Fetal TrisomY” – also capture genetic information about the mother, as well as personal details such as her country, height and weight, but not her name, BGI computer code viewed by Reuters shows.

So far, more than 8 million women have taken BGI’s prenatal tests globally. BGI has not said how many of the women took the test abroad, and said it only stores location data on women in mainland China.

The tests are a private procedure for the women who take them, a component in their routine prenatal care. But the studies show that they yield increasingly potent information for research.

One BGI study, for instance, used a military supercomputer to re-analyze NIFTY data and map the prevalence of viruses in Chinese women, look for indicators of mental illness in them, and single out Tibetan and Uyghur minorities to find links between their genes and their characteristics.

The scale of BGI’s accumulation of prenatal data, and its collaboration with the military in prenatal and neonatal research, have not been previously reported. The company has published at least a dozen joint studies on the tests with the People’s Liberation Army (PLA) since 2010, trialing and improving the tests or analyzing the data they provided, the Reuters review found.

DNA data collected from prenatal tests on women outside China has also been stored in China’s government-funded gene database, one of the world’s largest, the company confirmed. BGI, in which the Shenzhen city government and Beijing’s largest state investment vehicle took stakes in 2014, runs that gene bank.

Reuters found no evidence BGI violated patient privacy agreements or regulations. However, the privacy policy on the NIFTY test’s website says data collected can be shared when it is “directly relevant to national security or national defense security” in China.

Beijing made clear in a 2019 regulation that genetic data can be a national security matter, and since 2015 it has restricted foreign researchers from accessing gene data on Chinese people. In contrast, the United States and Britain give foreign researchers access to genetic data, as part of open science policies.

BGI said in a statement it “has never been asked to provide – nor provided – data from its NIFTY tests to Chinese authorities for national security or national defence security purposes.”

Other companies selling such prenatal tests also re-use data for research. But none operate on the scale of BGI, scientists and ethicists say, or have BGI’s links to a government or its track record  with a national military.

News BGI developed the prenatal tests with the PLA comes as international scrutiny is increasing over China’s use of civilian technology for military modernization. NATO has warned China’s assertive behaviour is a systemic challenge, and Beijing has drawn sanctions for alleged human rights violations in Xinjiang and stepped up a national security crackdown in Hong Kong.

The findings offer new insight into how BGI is using vast computing power to unlock genomic secrets. Previously, Reuters revealed how the company rapidly expanded its gene-sequencing labs globally and gained a role in other nations’ health systems, and how it worked with China’s military on research ranging from mass testing for respiratory pathogens to brain science.

The Reuters examination also sheds new light on concerns expressed by a U.S. expert panel, the U.S. National Security Commission on Artificial Intelligence (NSCAI), led by former Google chief executive Eric Schmidt. The panel said in March that the United States should recognize China’s strides towards global leadership in biotechnology and AI as a new kind of national security threat, and boost funding for its own research to counter China’s state-driven effort.

China’s Ministry of Foreign Affairs said the reporting in this article reflected “groundless accusations and smears” of U.S. agencies. The PLA did not respond. China has released new privacy and data security laws that offer greater protection of personal data, but also allow Chinese national security authorities to access that data.

BGI did not respond to questions on its military collaboration or the national security threats that the United States says its research poses. “At no stage throughout the testing or research process does BGI have access to any identifiable personal data or the ability to match that data with personal records,” the company said. Signed consent is obtained in advance, BGI said, and its data privacy protocols meet strict international standards.

A 2016 Chinese regulation requires samples and genetic sequences from the tests on Chinese women to be kept for at least three years, after which the women can request that the data is deleted. For women overseas, BGI told Reuters it destroys samples and deletes paper records and electronic data after a maximum of five years.

Some of BGI’s research has medical benefits, and BGI has cut the cost of gene sequencing so more universities, companies and hospitals worldwide can access sequencing technology, a key driver in the growing field of genomics. Genetics is the study of individual genes; genomics looks at all of a person’s genes, including how they interact with each other and the environment.

“Whilst BGI is a Chinese-based company, we consider ourselves part of the global race towards ending the COVID-19 pandemic and a key international contributor to the advancement of public health outcomes around the world,” the company said, adding it collaborates with a large number of academic and research organizations not just in China, but also the United States, United Kingdom and Europe.

‘Go global’

BGI is one of about half a dozen major providers of the tests, more generally known as non-invasive prenatal tests (NIPT), which women take about 10 weeks into a pregnancy to capture DNA from the placenta in the woman’s bloodstream. Its tests are marketed in at least 13 European Union countries, including Germany, Spain and Denmark, as well as in Britain, Canada, Australia, Thailand, India and Pakistan. They are not sold in the United States.

However, the company is a pivotal player in a genomics race between China and the United States. In its latest annual report, it said it “has been working hard to promote Chinese technology, Chinese experience and Chinese standards to ‘go global.’”

BGI grew as a result of Chinese government policies, said Anna Puglisi, a senior fellow at Georgetown’s Center for Security and Emerging Technology, who worked until 2020 as the U.S. government’s National Counterintelligence Officer for East Asia. “The Chinese state can really compel, in their national security law, companies to work with them,” she said, referring to a 2017 law requiring all Chinese organizations to assist national intelligence efforts.