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“Hold Your Institution Accountable”: The Uighur Crisis, Genetic Research, & Yale

“The last time I talked with my mom was December 31, 2017,” Adili Yilihamu told The Politic. 

Both of his parents have been detained by Chinese authorities, imprisoned with at least a million other Uighurs in what the government calls “political re-education centers.” 

A 30-year old Uighur Muslim now living and working in Boston, Yilihamu grew up in Moyu, Xinjiang with his mother, father and younger brother. In their hometown, the family ran a local restaurant and grocery store. His parents also worked for the Chinese Communist Party in their province. 

Though detention centers and re-education camps first sprung up in 2014, Yilihamu explains that for most of his life, Uighurs have not been able to openly practice their faith or engage in cultural practices.   

He described his religious upbringing and the difficult process of learning about his faith: “We were not allowed to learn Islamic [teachings]—everyone was learning [about] Islam secretly from parents or someone else.” 

Since the founding of the People’s Republic of China, the government has persistently repressed its Turkic Muslim minority, which predeominantly includes ethnic Uighurs—but also Uzbeks and Kazakhs. The state fears that its control could be compromised by this community’s distinct cultural and religious identity, as well as the Xinjiang region’s historic separtist tendencies. 

Separatist violence escalated in Xinjiang in the 1990s, and a particularly violent riot took place in the capital city of Urumqi in 2009. Some experts argue that violence has not been fueled by religious extremism, but is instead a reaction to Beijing’s repressive policies.  

Jessica Batke, a senior editor at ChinaFile, told The Politic, “Before 9/11, the Chinese government did not call any of these things terrorism–they always called it separatism.” 

She added, “They really latched onto the global war on terror and reframed their narrative around that…. You just have a whole different way of framing and approaching the problem, and it becomes evermore securitized.”

Yilihamu described a palpable intensification of the “security” environment in Xinjiang around 2012. This was when his family made the decision to start driving 45 minutes out of town for Friday prayers, to the city of Hotan—where fewer people knew them. 

To keep tabs on “suspicious” persons now, police monitor Uighurs through an innovative and multi-faceted surveillance regime—collecting information on physical movement, online communications, and even biometric data. 

Xinjiang’s territory has been split into a grid system, with each grid housing a police checkpoint to watch over its residents. Location services linked to peoples’ vehicles and phones complement the state’s ability to track their whereabouts. Officials may choose to limit a Uighur’s right to movement—internationally, domestically, or within Xinjiang. 

Police surveillance efforts are centered around a single app: the Integrated Joint Operations Platform (IJOP). Anytime authorities question someone or collect their personal data, information on the encounter is entered into this app and connected to the person’s national identification number. The IJOP’s algorithms may instruct officers to further question someone or, if deemed necessary, detain the person. 

Chinese officials do not attempt to distinguish peacefully practicing Islam from being an extremist. Donating to mosques, praying, and fasting during Ramadan are all seen as problematic behavior. According to human rights organizations, authorities also fault Uighurs for non-religious conduct, such as calling loved ones abroad. 

Sophie Richardson, China Director at Human Rights Watch, told The Politic,“It’s so many different, ordinary behaviors, that people are perfectly entitled to engage in, but also so clearly reflect the hostility and disdain that the Chinese government and Party have for ethnic minorities generally—but particularly for Turkic Muslims…” 

Yilihamu agrees with this characterization. After he moved to America to pursue his master’s degree, he continued to hear that it was becoming harder for his relatives to practice Islam. He was distressed to learn that even his elderly grandmother was fearful, taking precautionary steps by distancing herself from her faith. 

 “…Two years ago, I got a picture [of] my relatives,” he said. “The picture included my aunt, my grandmother, my cousins. All of them had taken off their hijabs, because [they were] afraid of getting arrested. Even my grandmother, who is 80 years old.”  

Despite such precautionary steps, Yilihamu worries that his decision to move to the U.S. is what endangered his family, reflecting, “The Chinese government still harassed my parents—the reason [being] because me and my brother went abroad to study.”

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Outside of detention, Chinese control over Uighurs is exercised not only through physical and digital tracking devices, but also through genetic surveillance. Tens of millions of Xinjiang residents were coerced into taking part in the “Physicals for All” program, in which in the state collected massive amounts of biometric data: audio recordings for use with voice recognition technology, iris scans, blood types, and DNA samples. 

With the help of a Yale professor, authorities learned how to use this information to further their genetic analysis capabilities: In February 2019, The New York Times reported that Kenneth Kidd, Yale Professor of Genetics, invited Li Caixia, a forensic physician from the Chinese Ministry of Public Security, to collaborate at his lab in New Haven. 

After nearly a year of working with Kidd, Li took DNA samples taken from various ethnic groups back with her to China; these samples were compared to DNA material from Uighurs. From there, Chinese police were able to understand how to genetically differentiate Turkic minorities from other groups, thanks to the research Li had done in New Haven. 

Between 2014 and 2017, Beijing’s Ministry of Public Security filed multiple reports, explaining that they had discovered a new means of genetically identifying people. The Ministry cited data obtained from Kidd’s lab in this paperwork. Chinese researchers also uploaded thousands of samples from ethnic Uighurs to the Allele Frequency Database, which Kidd runs. 

Yale affiliates working on research involving human subjects are usually required to present their proposals to an Institutional Review Board, or IRB. Professor Stephen Latham, Chair of Yale’s IRB on Social and Behavioral Research, relayed that the role of this body is to “make sure there is adequate procedure for getting the informed consent of the subjects and that the benefits of the research outweigh the risks to the subjects.”

Genetic materials are exempt from IRB oversight when the data cannot be traced to a particular subject. While Kidd’s collaboration with Li did not immediately threaten individuals, it gave Chinese officials the capability to further target Uighurs as a group. 

Latham expressed that American laws are not adequately designed to catch this type of risk, saying, “The law in the United States cares very much about whether a particular human subject can be harmed…. It’s quite possible, in this case, that if you didn’t think about what China might be doing to the whole pool of human subjects that you’re dealing with, there’s no mechanism that would catch that automatically.” 

When the story on this collaboration broke last year, Kidd’s response was essentially two-fold: he did not know how his work was going to be utilized, and it was his Chinese counterpart’s responsibility to get consent from Uighur research participants. He thought they were engaging in a routine collaboration and that his partner had done her due diligence in terms of meeting ethical standards. 

Richardson criticized Kidd’s rationale, telling The Politic, “Now, I realize Professor Kidd’s area of expertise is in genetics, but it is not very hard to know—especially if you have gone through standard research ethics review protocols—that we’re talking about a place that is effectively a police state.”

Richardson added, “To sort of suggest that Chinese police researchers could possibly have extended, to members of ethnic minority communities, the opportunity to say, ‘No thanks,’ have that be respected, and not result in some kind of persecution is shockingly, shockingly irresponsible.” 

Though this research ethics controversy first became public last year, the collaboration in question occurred five years ago. Batke explained, “Even five years ago, there weren’t camps set up, or at least not on the scale there are now, but there were still a lot of reasons to be concerned that people in that region would not be able to effectively give consent.” She added, however, that one might need to have been a political “specialist” to be fully aware of this reality. 

Latham said that while the legal system for research review has failed to address greater political context, “In the end, it’s each individual faculty member’s responsibility to do ethical research.” 

Yilihamu first heard about Kidd’s collaboration with Chinese police when he visited Yale last year. He came to campus to speak at an event sponsored by the Dwight Hall Peace Initiative (DHPI). Though Yilihamu says he does not know much about the collaboration itself, he finds it incredibly dangerous that the Chinese state has the technology to now distinguish their citizens’ ethnicities. “They’re using this data for genocide.”

After several news organizations, including the Yale Daily News, reported on Kidd’s work with Chinese authorities last year, there was no major student-led backlash on campus. Yale did not release an official statement in response, and Kidd did not apologize for any role his work may have played in assisting the Chinese regime’s repressive practices. Yale also did not publicize any institutional changes to safeguard against potentially harmful or unethical scientific research collaborations in the future. 

According to Richardson,Yale needs to ensure that none of the research done on its campus “introduces or creates or enables human rights violations.” She added, “How does Yale know that it doesn’t have 10 or 50 or 100 of other kinds of problematic collaborations that, at a minimum, would cause real reputational harm?” 

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While Richardson spoke to the complicity of academic institutions like Yale, Yilihamu emphasized the harm political leaders do by not speaking up about the crisis. He said that especially Muslim-majority countries, such as Pakistan and Saudi Arabia, have a responsibility to put their economic interests aside to stand in solidarity with Uighurs. 

Yilihamu said he was embarrased by the behavior of some Muslim-majority countries, explaining, “Sometimes, to be honest, I feel ashamed—I am a Muslim. I know the rizq [sustenance, wealth] comes from Allah. Muslim countries, like Saudi Arabia, they have oil; Allah gave them a lot of rizq, but they still try to help the Chinese keep secrets.” 

The Dwight Hall Peace Initiative (DHPI) is a Yale student group working to raise awareness about the Uighur crisis. Daud Shad, the group’s founder, said their mission is “to promote and support humanitarian and anti-war activism on campus.” The DHPI is pushing for a campaign called “Wednesdays for Uighurs,” in which they ask students to share relevant news stories and call on politicians to support legislation such as the Uyghur Human Rights Policy Act

The DHPI hosted an event on the Uighur and Rohingya crises in December where Yilihamu was a speaker. Shad told The Politic, “Having Rohingya and Uyghur advocates share how the respective crises impact their lives and communities was harrowing and powerful.”

Richardson expressed the need for more students to educate themselves on the Uighur crisis, especially by speaking to peers who may have a better understanding of the region’s politics, saying, “You’re sitting in a community that includes people from Xinjiang, from the mainland, from Hong Kong, from Taiwan—lots of people who are presumably interested in these issues. Reach out to those people!” 

Referring back to the Kidd controversy, she added, “But also hold your institution accountable, and find your counterparts at other schools who are trying to do the same.”