Nifty prenatal genetic test under international watch amid links to Chinese military

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Health regulators in five countries are examining a prenatal test that collects DNA from women and fetuses for research after it emerged that the maker of the test had ties to the Chinese military.

Some doctors and clinics that promoted and sold the test, marketed under the Nifty brand, said they were unaware that the Shenzhen-based BGI group is also conducting research with the Chinese military.

The test is sold in at least 52 countries and has been taken by 8.4 million women worldwide. He screens for Down syndrome and over 80 other genetic diseases.

Canada’s Privacy Commissioner said a Reuters report on the matter raised important questions about “highly sensitive” information. The commission is looking into the matter. Two regulators in Europe – Slovenia and Germany – have said they are reviewing the test in light of European Union data protection rules.

Regulators in Germany, Australia, Estonia and Canada have called for transparency in BGI’s use of women’s genetic data and said that even though the data is sent overseas, BGI’s local providers are responsible for ensuring the confidentiality of data. The European Data Protection Supervisor said he was monitoring the situation.

“It is essential that the patient receives clear information,” said Beverley Rowbotham, chair of the National Pathology Accreditation Advisory Council of Australia.

Regulators’ concerns highlight the challenges of regulatory oversight when genetic data is passed from one country to another.

The data privacy regulator in Slovenia, where one of BGI’s regional partners is based, said it was concerned about exporting data from BGI tests and would look into data protection issues.

Reuters reported in July that more than a dozen scientific studies – including clinical trials – showed that BGI had developed and improved the test in collaboration with the People’s Liberation Army (PLA) hospitals. BGI uses genetic data from pregnant women for population trait research. It also collaborates with the PLA in other areas of research.

BGI rejected any suggestion that it developed the Nifty test in collaboration with the military and said working with military hospitals was not equivalent. He said he works with thousands of healthcare providers, other prenatal testing providers in China work with military hospitals, and many companies around the world work with the military. He said he takes data privacy seriously, complies with applicable laws and regulations and that only 5% of his Nifty tests were performed on women overseas.

Reuters found no evidence that BGI violated any confidentiality agreements or regulations; the company said it got a signed consent and destroyed the samples and data overseas after five years. “At no stage of the testing or research process does BGI have access to personally identifiable data,” the company said.

Consent forms signed by women outside of China ask for permission to send their blood samples and genetic data overseas to BGI and use them for research. The privacy policy on the test’s website also says data may be shared for national security purposes in China – although BGI says it was never asked to do so.

An Ontario regulator told Reuters it is now advising women to seek testing from vendors in Canada or in places where data security is “comparable.” Quebec’s regulator has said prenatal testing – like genetic testing for consumers – can cause people to lose control over their genetic information. Canadian privacy and genetic disclosure laws can impose fines of up to C $ 250,000 to C $ 1 million for violations, and set strict conditions for exemptions for scientific research.

“Genetic information is not only valuable for traders and data brokers, but also for foreign states and cybercriminals,” the Information and Privacy Commission Office said. Ontario.

Reuters previously reported that BGI’s joint research with PLA medical institutes is wide ranging, from efforts to protect soldiers from altitude sickness to mass testing for pathogens. U.S. government advisers warned in March that a vast genomic database that BGI is amassing and analyzing with artificial intelligence could give China a path to economic and military advantage.

Laboratories in Spain and Slovenia each told Reuters that a client’s genetic data had been used by BGI in mainland China for research purposes, with informed consent.

Slovenia-based GenePlanet, which says it sells the Nifty tests across Europe and also offers its own test using BGI technology, said the Slovenian customer had agreed to a “research test”.

GenePlanet said it was operating in accordance with EU regulations and had an agreement with BGI that “none of the GenePlanet patient data generated from [the] The smart process is going to mainland China ”.

Data on Slovenian and Spanish women were among those for 542 women stored in China’s national bank of GeneBank, which BGI also manages. BGI said the data from the 542 women had not been used for other purposes and that its “scientific research only uses anonymized data.”

Eluthia GmbH, a German laboratory that sells BGI’s test, said its transfer of female blood and patient data to BGI has been suspended by the Hessian region data protection regulator while it investigates to find out if the rules had been broken.

BGI told Reuters it was providing information to Eluthia and relevant government authorities to demonstrate that it complies with data protection laws.

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