September 7, 2022
Media contact: National Consumers League – Katie Brown, firstname.lastname@example.org, (202) 207-2832
WASHINGTON, D.C. – The National Consumers League (NCL) today announced it is launching a national campaign – www.protectmypatientdata.com – to warn Americans of the threat posed by the Chinese government’s 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.
According to a February 2021 report 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’ health records.
On June 3, 2021 President Biden signed an Executive Order to further “address the threat of Chinese surveillance technology firms that contribute – both inside and outside China – to the surveillance of religious or ethnic minorities or otherwise facilitate repression and serious human rights abuses.”
“Genetic 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,” said Sally Greenberg, executive director of NCL. “Authoritarian 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.”
NCL has a long history of calling for consumer protections in the genetic testing industry. In February 2019, NCL issued a statement 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.
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’s Liberation Army (PLA) and the data it collects has no legal protection against disclosure to the Chinese government.
A recent Reuters investigation 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 by the U.S. Department of Commerce.
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’s 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 and released a Policy Framework detailing steps that Congress, the Biden Administration, and industry can take to protect these consumer rights.
In addition to the education campaign, NCL will also embark on a series of initiatives to protect consumers:
- Working with Members of Congress to create and implement new protections for genetic data, such as the Protecting Americans’ Data from Foreign Surveillance Act, introduced by Sen. Wyden (D-OR), Sen. Whitehouse (D-RI), Sen. Rubio (R-FL), Sen. Lummis (R-WY), and Sen. Hagerty (R-TN).
- Engaging with the Biden Administration as they develop a potential Executive Order aimed at increasing protections for sensitive personal information, like genetic data.
- Participating in the Federal Trade Commission’s (FTC) rulemaking process regarding privacy and data protection, to ensure that genetic data is also protected.
- Educating health care research institutions and major health care associations about the unique risks posed by a lack of safeguards for genetic testing, and what they can do to increase protections.
About the National Consumers League (NCL)
The National Consumers League, founded in 1899, is America’s pioneer consumer organization. Our mission is to protect and promote social and economic justice for consumers and workers in the United States and abroad. For more information, visit www.nclnet.org.