China’s gene giant harvests data from millions of women

A Chinese gene company that sells prenatal tests around the world has been harvesting genetic data from millions of women.

The company – BGI Group – worked with the Chinese military to develop the tests.

BGI is using the genetic data for sweeping research on population traits.

The U.S. sees it as a security risk.

Government advisors warn that BGI’s vast bank of genomic data could give China a path to economic and military advantage and potentially lead to engineered pathogens or genetically enhanced soldiers.

"I want to know what is happening with such sensitive data about me, such as my genome and that of my child.”

This is Emilia.

She’s one of the more than 8 million women who have taken the BGI prenatal test.

The 32-year-old office administrator spoke to Reuters on the condition that only her first name be used.

She says she did sign consent stating that her genetic data would be stored and used for research.

What she did not realize, however, was that her information could end up in mainland China: BGI’s headquarters and research are based in Shenzhen, but the form she signed did not make this clear.

It said only that her sample would be sent for analysis to Hong Kong.

“I have to admit that the news that my data could’ve been taken over by the Chinese government is shocking for me. After reading the form, I had the impression that I was well-informed about the test and how the data would be used. There was information that, if I agree to it, can be used for further studies to improve the method. But no, there wasn’t much else.

BGI said it had never been asked by the Chinese government to provide the genetic testing data for research.

The companies prenatal test – branded NIFTY - is one of the most popular in the world.

It’s sold in at least 52 countries – though not in the United States.

Tests like this, taken about 10 weeks into a pregnancy, capture DNA from the placenta in the woman’s bloodstream, to detect fetal abnormalities like Down syndrome.

The tests don’t carry names, but they do capture genetic information about the mother -- which the test’s privacy policy says may be shared, for national security reasons. BGI said it hasn’t been asked to do that.

Online records reviewed by Reuters show that the genetic information of at least 500 women – including some outside of China, are also stored in China’s national genebank.

Each row seen here is a different woman.

Reuters could not determine if Emilia’s data is in the gene bank.

BGI records personal details such as women’s country, height and weight.

Researchers say this genetic Big Data can give clues to genes associated with for example bipolar disease, or schizophrenia, link genes to height and body fat, and track viruses.

While the procedure is private – the data is stored.

Reuters found no evidence that BGI violated patient privacy agreements or regulations.

BGI says it never has access to any identifiable personal data.

The company says it only stores location data on women in mainland China, and destroys foreign samples and data after five years.

BGI's collaboration with the military on prenatal research has not been previously reported.

The gene giant is a pivotal player in a genomics race between China and the U.S.

An expert panel led by former Google chief executive Eric Schmidt said in March that the United States should recognize China’s strides in biotechnology and AI as a new kind of national security threat.

BGI did not respond to questions on its military collaboration or the national security threats that the U.S. says its research poses.

China’s Ministry of Foreign Affairs said the report reflected – quote -“groundless accusations and smears" of U.S. agencies.

Over in Poland, Emilia says that if she had understood the extent of BGI's secondary research, she would have chosen a different test.

"This could be a very important matter when choosing a test. For me it would be.”

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