China makes genetic data a national resource
The Chinese government has identified genetic data as a national strategic resource and is strengthening state control over the country's gene banks and other repositories of genetic information.
Why it matters: The collection and use of genetic information are fraught with ethical concerns, including consent and privacy, exploitation of marginalized groups, and a growing transnational trend toward genetic surveillance.
- "The Chinese authorities are making a real effort to protect the genetic information of Chinese citizens from non-state actors," Yves Moreau, a geneticist at the University of Leuven in Belgium, told Axios, while carving out a "huge exception for the state."
Driving the news: Newly released draft guidelines prohibit the genetic information of Chinese nationals from being sent abroad and mandate the cataloging of human genetic databases, including data at academic institutions, to be carried out every five years.
- The guidelines offer details for implementing a brief set of regulations issued by China's State Council in 2019 for governing the management of genetic information after a major scandal in which a Chinese scientist performed gene-editing on human embryos.
- They specifically designate the science and technology bureau of the Xinjiang Production and Construction Corps — a sprawling paramilitary organization sanctioned by the U.S. government for complicity in operating mass internment camps and forced labor in Xinjiang — as responsible for managing the survey in the regions it administers.
The big picture: Other countries, including the U.K. and the U.S., have created large databases of genetic and health information from hundreds of thousands of participants, but China's new rules suggest a new level of governmental control on genetic information.
- "It’s natural for any state to consider genetic information something strategic. But this is going very far, saying that the state will be the central judge of how we manage this kind of information, both internationally and nationally," Moreau said.
- The prohibition on transmitting Chinese genetic data abroad and protecting it from abuse by private actors, while ensuring the government has total access and control, resembles the principle enshrined in China's new data privacy law.
- "It comes from a philosophy that seems to be quite strong right now in China as viewing genetic resources as a strategic resource. Like 'data is the new oil' — genetic data is one of those things," Moreau said.
In recent years, Chinese government authorities and private companies have vacuumed up genetic information on people both inside and outside of China.
- Chinese authorities collected blood samples from men across China to create a genetic map of the entire country's male population, an undertaking that the New York Times called a "major escalation of China’s efforts to use genetics to control its people."
- In the northwest region of Xinjiang, Chinese authorities have forcibly collected biological samples from the same ethnic minority population they are targeting in a genocide.
- Chinese genomics giant BGI stored genetic information from women around the world who had used BGI-made prenatal tests.
Details: China's regulations include standard language on privacy and consent, said Lisa Parker, director of the Center for Bioethics & Health Law at the University of Pittsburgh.
- But the context of China's regulations on genetic information is concerning, Parker said, such as a lack of meaningful consent in instances where people may be afraid that refusing to hand over genetic data could result in retaliation.
- Parker also raised the risk of exploitation. "We’ve learned from our independent tribal nations in the U.S. that they feel their genomic resources were exploited," Parker said.
- Privacy in the Chinese government's eyes means privacy from other nonstate actors — not privacy from the government.
The bottom line: "This text makes it clear that there is no way for an academic group working on genetic data of Chinese ethnic groups to declare that this cannot be accessed by law enforcement,” Moreau said.