By Liam Mannix
In Xinjiang, Uyghurs and other minority groups live in a police state. More than a million men, women and children have been taken from their families and held by the Chinese government in re-education camps; there are allegations of forced sterilisation, forced labour and genocide.
Despite this context, Australian researchers have, over the past decade, collaborated with Chinese colleagues on several studies of tissue and DNA taken from Uyghurs and other minorities in Xinjiang.
Australian researchers have been involved in research in Xinjiang, Credit: Stephen Kiprillis
There are now questions about whether the test subjects truly gave informed consent for their DNA and blood to be taken.
“We don’t have any rights to say yes or no to anything,” said Adam Turan, a Uyghur who left the region in 2011. His family remains there.
Consent is an important pillar of human research. Research subjects must freely give it, and Australian collaborators must assure themselves Australian ethical standards have been met – including in cases where the study was done overseas.
In July, an Australian-Chinese study testing the DNA of ethnic minorities in Xinjiang to help build a forensic database was pulled from the scientific record after it emerged police may have been involved in collecting the samples.
This masthead can also reveal another Australian team worked on ways of measuring ethnic identity at a boarding school program for Uyghurs.
Turan said children were often forcibly removed to such schools, which exist to stamp out Uyghur culture.
Other Australian researchers have collaborated on studies funded by a Xinjiang-based organisation now under international sanction for human rights abuses.
Australian scientists and universities defend their right to work freely with international colleagues as integral to the advancement of science, and say they have followed all rules on informed consent.
Members of the Uyghur community in Turkey hold banners in 2021 outside China’s consulate in Istanbul showing Uyghurs feared detained in camps in Xinjiang.Credit: AP
“The right to share in and benefit from scientific advancement is enshrined in the Universal Declaration of Human Rights, as is the right to engage in scientific enquiry, to communicate knowledge, and to associate freely in such activities,” reads a position statement from the Australian Academy of Science.
But other researchers call some work ethically questionable.
“I would think [collecting DNA] would be a red line for anyone who has read any news in the last seven or eight years – but clearly it’s not,” said Monash University’s Dr Kevin Carrico, who studies the ethics of research in China. “I am baffled by how researchers could find themselves working in this context. It’s genuinely beyond comprehension.”
Forensic DNA profiling of minorities in Xinjiang
In 2017, scientists in China collected blood from 1842 members of ethnic minority groups, not including Uyghur people, living in Xinjiang. The study was funded and ethically approved by Chinese institutions, and was designed to help build a forensic database to help identify DNA found at crime scenes.
Professor Dennis McNevin, a highly respected forensic geneticist now at the University of Canberra, was called in by one of the researchers to help analyse the results.
“I considered it my professional duty to help my overseas colleagues,” he told this masthead. He obtained the participants’ consent forms. “All looked to be in order.”
Not all participants could read or write, so some “signed” by voice and others by thumbprint. McNevin later learned that a police officer may have been present in some cases.
Police are often involved in collecting such data, McNevin said.
But Adam Turan, who is president of the East Turkistan Australian Association (the phrase Turan uses to refer to his homeland), said it was not possible for Uyghurs in Xinjiang to refuse a request from the government or police. “If you say no, your name will be ticked that you have views against the government,” he said.
Adam Turan, president of the East Turkistan Australian Association, photographed in Adelaide.Credit: Kelly Barnes
After concerns were raised about consent, the journal that published the study investigated and retracted it in June.
China has been building a vast DNA database as part of a biometric surveillance strategy. The research itself could not directly contribute to that, experts said.
“But where are the DNA samples? Where did they end up?,” asked Kate Pippia, founder of DNA testing service Identilab.
McNevin said he “cannot discount the possibility” the DNA collected is being used for other purposes.
“I am going to be reluctant now to collaborate with foreign colleagues where I do not have first-hand experience of everything that happens on the ground,” he said. “Perhaps I was naive in this respect.”
The paper’s retraction raises concerns about other Australian-Chinese research collaborations in Xinjiang.
A satellite image shows a forced internment camp in the Xinjiang region of China. Experts say the Chinese government has detained up to 1.8 million Uighurs, ethnic Kazakhs and other Muslim minorities for what it calls "voluntary job training".Credit: Planet Labs via AP
In the past decade, Australian researchers have studied the human papillomavirus (HPV) in Uyghur people and screened them for genetic susceptibility to diabetes. The latter study had $572,000 of Australian government funding.
“In the context of ongoing crimes against humanity targeted at the Uyghur people, a high degree of scepticism regarding informed consent should be applied,” said Dr Henryk Szadziewski, director of research at the Uyghur Human Rights Project.
The universities and authors involved all said the consent process was checked by the journal before the studies were published.
A spokesman for the University of the Sunshine Coast said that because the blood samples for the HPV study were collected in China, and the Australian researcher was involved only in an “editorial capacity”, Australian human ethics approval was not required. Edith Cowan University said it was investigating the “specific details of the ethics approval process” for the diabetes study.
School children surveyed
In 2014 and 2016 a researcher from the University of Melbourne surveyed students at a Xinjiangban school in China. These boarding schools take ethnic minority children to try to suppress their ethnic identity; the UN has described the schools as a program of forced assimilation.
“My brothers’ children were taken to a school like that when they were three or four, without consent,” said Turan. “The bottom line is they are going to destroy our ethnic identity.”
The researcher surveyed the students on how strong their sense of belonging to their ethnic group was, whether they “loved China”, and whether they felt “angry if someone speaks ill of China”.
Daria Impiombato, an analyst who researches human rights issues in China at the Australian Strategic Policy Institute, called the study “absolutely outrageous”.
“You’re trying to inculcate a Chinese national identity into ethnic students and make them forget about their original ethnic identity,” she said. “The author is trying to verify whether this program has been effective.”
The University of Melbourne said it was “looking into the details surrounding this matter”.
Funding for Australian institutions
In a number of cases, academics at Australian institutions have collaborated on research funded by the Xinjiang Production and Construction Corps.
These include studies on cloud computing, self-driving vehicles and solar panels.
XPCC is under global sanction from the US government over alleged human rights abuses against Uyghurs in Xinjiang.
Henryk Szadziewski described the XPCC as a “paramilitary government entity known for its role in land expropriation and its deployment by the highest levels of the party-state to suppress Uyghur dissent”.
Workers install solar panels at a photovoltaic power station in Hami, Xinjiang.Credit: AP
The Australian Renewable Energy Agency, which funded some of the research, said it did so three years before the sanctions were applied; other universities involved in the research said their academics either did not receive any direct XPCC funding or were unaware that XPCC was involved in funding the research.
Solving the problem may prove harder than identifying it.
Science is by its nature collaborative. But publishers, journal editors and Australian universities needed to apply a wary eye to any research coming out of Xinjiang, said James Leiboldt, a professor at La Trobe University and a former director of the Xinjiang Data Project, rather than leaving it all up to individual academics.
“I find it really problematic when an Australian-based researcher will say, ‘Oh, my collaborator in Beijing was responsible for getting ethics approval.’”
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