A respected science journal has withdrawn a study that collected DNA samples from Tibetans and Uyghurs without informed consent.
It comes against the backdrop of China’s increasing crackdown on ethnic minorities in Tibet and the northwestern region of Xinjiang, using tactics such as cultural and religious suppression, mass internment, forced labor, and the separation of families.
Human Genetics published a retraction note to the article in early January, stating the authors have “not been able to verify whether appropriate informed consent was obtained from all study participants.”
The study, which set out to reexamine the male genetic landscape of China based on almost 38,000 DNA samples for Y chromosome variation across Chinese ethnic communities, used genetic data from Tibetans, Uyghurs, and Kazakhs.
It was published in Human Genetics in 2017, the same year reports emerged about Chinese police collecting Uyghurs’ DNA samples for mass surveillance, British solicitor Samuel Pitchford wrote in a post for Human Rights Pulse on Jan. 5.
Like other retracted papers on the same topic, the study “failed to evidence” that the authors complied with international ethical standards under the Declaration of Helsinki, which require physicians “to protect the life, health, privacy, and dignity of the human subject.”
“The purpose of medical research is to benefit human beings, but that can only happen if physicians respect the human rights of their subjects,” Pitchford wrote.
The study first caught the attention of Yves Moreau, a bioinformatician at KU Leuven in Belgium, who found the sheer volume of data and participation of coauthors from Chinese law enforcement organizations in the study particularly problematic.
He then asked the journal’s editors in June 2020 to withdraw the “indefensible” paper, prompting an investigation by the journal’s publisher Springer Nature.
The study was finally taken down in December 2021, splitting its Chinese and German authors, with some agreeing to the retraction and others opposing it.
DNA Samples as Tools for Surveillance
This is not the first time a science paper has faced pushback due to the use of non-consensual DNA samples.
In August and September 2021, two medical studies by Chinese researchers involving the gathering of DNA variants in the Eurasian community have been retracted by the International Journal of Legal Medicine and Human Genetics, respectively, which cited concerns over “ethics and consent procedures.”
Since 2019, Moreau has reported more than 80 China research papers to almost every major academic publisher for investigation, but most of the time his efforts fell on deaf ears.
“It’s really quite embarrassing that no one, especially these journals, thought of this,” he told the South China Morning Post on Sept. 12, 2021.
The United Nations Special Rapporteur on the right to privacy has noted that DNA databases are subject to “potential misuse for government surveillance, including identification of relatives and non-paternity, and the risk of miscarriages of justice.”
“Mass DNA collection by the powerful Chinese police absent effective privacy protections or an independent judicial system is a perfect storm for abuses,”said Sophie Richardson, China director at Human Rights Watch. “China is moving its Orwellian system to the genetic level.”
China Science Research Stumbles Over Ethical Standards
But while the “misuse” of non-consensual DNA samples in research papers only surfaces recently, other “ethical lapses,” such as the lack of transparency in the reporting of China’s organ donors, do not, Pitchford added.
According to a 2019 research published by the British Medical Journal, between 2000 and 2017, 99 percent of publications involving organ transplantation in China, or 435 publications, failed to prove that organ donors gave consent, while 92.5 percent (412 publications) failed to clarify whether organs were sourced from executed prisoners.
The findings have resulted in the retractions of “more than two dozen science papers,” Pitchford said.
It comes as an independent tribunal by Sir Geoffrey Nice QC concluded (pdf) that Chinese doctors, under the command of the state, have killed “thousands of innocents” for their organs.
Chinese bioethicist Nie Jing-Bao, who now works at the University of Otago in New Zealand, told the journal Science on Aug. 10, 2021 that it “can be very difficult to judge the validity of informed consent in China.”
“Explicit and especially implicit pressure [to give consent] often exists in various forms,” he said.
However, Springer Nature Director of Journal Policy Ed Gerstner argued last year there is no merit in boycotting studies from an entire country.
“All research deserves to be assessed on its own merits—and adherence to ethical standards, regardless of its country of origin,” he said.