Report Draws Patient Privacy Concern with Prenatal Test

A globally used, prenatal test is being used by a Chinese company to collect patient data, according to a new Reuters report.  

The exclusive Reuters report, published on July 7, states that the BGI Group collaborated with the Chinese military to collect genetic data from the prenatal tests.  

China’s BGI Group and the People’s Liberation Army collaborated on the NIFTY prenatal blood test, according to the report.  

NIFTY (Non-Invasive Fetal TrisomY test) is “a safe, simple, non-invasive 
prenatal test...which offers screening for certain genetic conditions from as early as week 10 of pregnancy,” according to the NIFTY website. 

BGI, headquartered in China and with locations worldwide, including one in Cambridge, Massachusetts, is the “world’s leading provider of genomic sequencing services and proteomic services, now serving customers in more than 100 countries,” according to its mission statement.  

“The United States sees BGI's efforts to collect and analyze human gene data as a national security threat,” the Reuters report states. 

Over 8 million women globally have taken BGI's prenatal tests, which uses blood samples to screen for genetic conditions, including Down Syndrome and Edwards Syndrome.  

“BGI uses leftover blood samples sent to its laboratory in Hong Kong and genetic data from the tests for population research,” the report states.  

The report states that the news organization “found the genetic data of over 500 women who took the test, including women in Europe and Asia, is also stored in the government-funded China National GeneBank in Shenzhen, which BGI runs.” 

BGI told Reuters that consent is obtained. “’At no stage throughout the testing or research process does BGI have access to any identifiable personal data,’” BGI told Reuters, according to the report.  

The U.S. National Counterintelligence and Security Center told Reuters “that women taking the NIFTY test abroad should be concerned by a privacy policy that allows data to be shared with Chinese security agencies.” 

According to the report, BGI and the Chinese military hospitals started working together to study fetus genomes in 2010.  

“The PLA General Hospital in Beijing and Third Military Medical University in Chongqing ran clinical trials on the NIFTY test in 2011,” the Reuters report states. “They worked with BGI researchers to expand the genetic abnormalities the test screens for, papers published in 2019 and 2020 show.” 

Genetic information about the fetus and mother, and personal information including the customer’s medical history and country, were collected, Reuters reported.