Chinese firm harvesting genetic data of millions of women, including from India?

BGI, a Chinese gene company that produces and sells Non-Invasive Prenatal Testing tests, branded as NIFTY (non-invasive petal trisomY test), has been found to have been collecting genetic data from the millions of women who have used the test in more than 52 countries. 

The countries include 13 European Union nations like Germany, Spain and Denmark as well as Britain, Canada, Australia, Thailand, India and Pakistan.  

According to international news agency Reuters which reviewed scientific papers and company statements, the data collected from the tests, which has been taken by about 8.4 million women worldwide, is stored by the company, and it reanalyses leftover blood samples and genetic data from the tests to detect genetic abnormalities in the foetus. 

It also says that the test data is held anonymously, but it does collect genetic information about the mother besides personal details such as her country, height and weight but all anonymously. Out of the approximately 8 million women who have taken the test, BGI has not clarified how many are within and outside of China. 

The tests are a private procedure, and according to BGI, the women sign consent forms before they take the test. However, the consent forms do not specify the company sharing the data with the Chinese government. The company ordinarily does not have to share the data, but under the circumstances, it is required to if the data is "directly relevant to national security or national defence security" in China. 

China made genetic data a national security concern through a 2019 regulation. The genetic data is also stored at the government-funded China National GeneBank in Shenzhen, which is run by BGI. BGI also routinely collaborates with the military in studies and has been doing so since 2010. 

One BGI study used a military supercomputer to analyse the test data and map the prevalence of viruses in Chinese women as well as indicators of mental illness. It also singled out Tibetan and Uyghur minorities to find links between their genetic characteristics. 

However, the scale of the company's accumulation of data, many other companies selling similar tests also research reused data but not at such a scale; and its frequent collaboration with the military in research has not been previously reported. 

China has also, since 2015, restricted foreign access to data when common practice as part of open science policy calls for open access like the US and Britain give foreign researchers access to their genetic data. 

A US expert panel, the US National Security Commission on Artificial Intelligence led by Eric Schmidt, said in March that the US should recognise China's advances in biotechnology and AI as a new kind of national security threat and in order to compete with the opposing country, it should increase its own funding in the sector. 

US government advisors also warned in March that a large amount of genomic data being amassed by BGI and is being analysed using AI could give China not a health advantage but also an economic and military advantage. 

The advisors said that the technology could allow China to dominate global pharmaceuticals but also lead to biowarfare using engineered pathogens to target the US people or food, a concern for any other country as well, but also lead to genetically modified soldiers and human beings; however, the test is not sold in the United States. 

BGI did not address the questions regarding its military collaborations but said it does not access any personal data or have the ability to match that data with personal records.

It added that its privacy protocols meet international standards. It also said that it has never been asked to provide -- nor provided -- Chinese authorities with data from its NIFTY tests for national security or national defence security purposes.

China's Ministry of Foreign Affairs termed media reports as being 'groundless accusations and smears' reflecting the sentiments of US agencies. Even though the country has improved its personal data laws, it has also allowed Chinese national security authorities greater access to said data. 

BGI's research has yielded medical benefits such as reducing the cost of gene sequencing and making the technology more accessible in order to grow the field.

The US National Counterintelligence and Security Center, which has before warned about the Chinese firm's collecting data, said in response to the report published, "Non-invasive prenatal testing kits marketed by Chinese biotech firms serve an important medical function. But they can also be used by the People's Republic of China and Chinese biotech companies to collect genetic and genomic data." 

Anna Puglisi, a senior fellow at Georgetown's Center for Security and Emerging Technology, said, "The Chinese state can really compel, in their national security law, companies to work with them." 

She was referring to a 2017 law that requires all Chinese firms to cooperate with and assist national intelligence efforts. 

She added, "When you can combine large amounts of genomic data -- including mothers and their unborn children -- with their medical data and history, it is really powerful." 

BGI said that this year it had built 80 Covid labs in 30 countries which, after the pandemic, it plans to use for reproductive health screening. It also said that the covid-19 tests do not collect data, but the prenatal tests do. 

The GeneBank, according to BGI, does not contain data of women outside mainland China but records reviewed by Reuters found that at least 500 women belonging to other countries had their data stored in the government-funded bank. 

According to a hospital document, BGI signed a research cooperation agreement with the People's Liberation Army General Hospital in Beijing as part of its military projects and studied the genomes of foetuses and newborns since 2010. 

In the same hospital, the clinical trial for NIFTY started on 3000 women. BGI also worked with Third Military Medical University in Chongqing's Liang Zhiqing, the vice-chairman of the PLA's Institute of Obstetrics and Gynaecology -- 5 joint studies came out of the collaboration. 

According to the European Journal of Medical Genetics paper, Liang's work and research were also government-funded as a "Military Medicine Innovation Project", and the samples were sequenced in a joint laboratory at the university. 

Both entities ran conferences on preventing birth defects and "improving population quality." BGI has also collaborated with the military hospitals on genetic research that aims to enhance soldier's performance by helping identify genes related to hearing loss, using stem cells and gene therapy on combating deafness in soldiers caused by weaponry. 

It also published studies with the Third Military Medical University in Chongqing on whether drugs interacting with certain genes could save the Han Chinese from a brain injury at high altitudes. These are regions with border tensions and other conflicts. 

In a research paper published in Cell, BGI researchers said that they had performed the largest population study in genetics in the Chinese population ever using 141,000 reused prenatal tests. The researchers said that the tests "provide an untapped resource" in understanding how genes react with the external environment and pathogens as well, as the tests offer "considerable mapping power". 

The researchers found genes associated with mental illnesses, immune responses and resistance to malaria and were able to track viruses like hepatitis B, which the study found was common among the Chinese population, and two types of herpes viruses which were more common in Europeans. 

Rasmus Nielsen, a biology professor at UC Berkley, had advised the BGI researchers on how to extract information from the data for the study and in 2018 said in a newsletter, "It is amazing that this is even possible," adding, "You can take these massive samples and do association-mapping to see what the genetic variants are that explain human traits." 

Now Nielsen told Reuters that he had not worked with the BGI since the 2018 study and had ended a decade long partnership because Chinese law restricted foreign researchers' access to Chinese genomic data. 

He said, "Things are really changing in China," and added, "science used to be free." 

China's collection and analysis of the Uyghur population have received criticism and has been labelled as "abusive DNA collection and analysis schemes to repress its citizens" by the US even though BGI denied its involvement in any human rights issues in the region. China's foreign ministry said that the health checkups of minorities did not collect DNA data.