{"id":22594,"date":"2022-09-07T13:13:38","date_gmt":"2022-09-07T13:13:38","guid":{"rendered":"https:\/\/nclnet.org\/?p=22594"},"modified":"2022-09-07T13:40:26","modified_gmt":"2022-09-07T13:40:26","slug":"ncl-launches-campaign-to-warn-americans-about-chinese-governments-collection-of-u-s-consumers-genetic-data","status":"publish","type":"post","link":"https:\/\/nclnet.org\/genomic-privacy-campaign\/","title":{"rendered":"NCL launches campaign to warn Americans about Chinese government\u2019s collection of U.S. consumers\u2019 genetic data\u00a0"},"content":{"rendered":"

September 7, 2022<\/p>\n

Media contact: National Consumers League \u2013 Katie Brown, katie@nclnet.org, (202) 207-2832\u00a0<\/strong><\/p>\n

WASHINGTON, D.C. \u2013 The National Consumers League (NCL) today announced it is launching a national campaign \u2013 www.protectmypatientdata.com<\/a> \u2013 to warn Americans of the threat posed by the Chinese government\u2019s collection of U.S. healthcare and genomic information. The campaign will target consumers, healthcare leaders, and lawmakers and will highlight the privacy and national security risks resulting from this bulk collection of data.<\/p>\n

According to a February 2021 report<\/a> from the U.S. National Counterintelligence and Security Center (NCSC), the Chinese government has made the collection of American healthcare information a top strategic priority and has gained access to large datasets in the U.S. and around the world through both illegal and legal means. This includes partnering with prominent research and healthcare entities in the U.S. to provide them with genomic sequencing services, allowing them to gain access to Americans\u2019 health records.<\/p>\n

On June 3, 2021 President Biden signed an Executive Order<\/a> to further \u201caddress the threat of Chinese surveillance technology firms that contribute \u2013 both inside and outside China \u2013 to the surveillance of religious or ethnic minorities or otherwise facilitate repression and serious human rights abuses.\u201d<\/p>\n

\u201cGenetic data remains one of the most sensitive and least protected types of personal information and yet the consequences of it falling into the wrong hands are profound,\u201d said Sally Greenberg, executive director of NCL. \u201cAuthoritarian governments have already used genomic data to potentially surveil and control their own citizens and to conduct unsanctioned scientific research. That is why NCL is sounding the alarm and urging consumers and healthcare providers to be more diligent than ever when sharing personal healthcare information with third parties, particularly those funded or operated by the Chinese government.\u201d<\/p>\n

NCL has a long history of calling for consumer protections in the genetic testing industry. In February 2019, NCL issued a statement<\/a> calling for investigation of direct-to-consumer genetic testing services like FamilyTreeDNA in the wake of reports that these services were sharing genetic data with law enforcement agencies.<\/p>\n

On August 29, 2022, MGI Americas, an affiliate of Chinese genome research giant BGI, re-entered the U.S. next-generation sequencing market, having been previously barred from selling its genome sequencing machines in America. BGI is closely affiliated with the Chinese Communist Party (CCP) and People\u2019s Liberation Army (PLA) and the data it collects has no legal protection against disclosure to the Chinese government.<\/p>\n

A recent Reuters investigation<\/a> found that BGI had scraped the DNA data of pregnant women from its pre-natal test kits and added them to the China National GeneBank, which it manages for the Chinese government. BGI has also been implicated in the repression of the Uighur minority in Xinjiang, for which two of its entities were sanctioned<\/a> by the U.S. Department of Commerce.<\/p>\n

NCL is urging providers and researchers to be cognizant of the risks of partnering with BGI and other Chinese healthcare companies, whose collection of data could be used to advance the country\u2019s precision medicine industry and for more nefarious purposes, including the potential surveillance, exploitation, and manipulation of American citizens. NCL recently published a Genetic Privacy Bill of Rights<\/a> and released a Policy Framework<\/a> detailing steps that Congress, the Biden Administration, and industry can take to protect these consumer rights.<\/p>\n

In addition to the education campaign, NCL will also embark on a series of initiatives to protect consumers:<\/p>\n