A science journal has retracted a paper that used DNA samples taken from Tibetans and Uyghurs, who most likely did not consent. The retraction by respected journal Human Genetics is its second this year. The retraction note was published the same day as an independent tribunal concluded that China is subjecting Uyghurs to torture, crimes against humanity, and genocide. The spat of retractions calls into question the ethics of scientific collaboration with China.
CHINESE SCIENTISTS USING NON-CONSENSUAL DNA SAMPLES
Yves Moreau, a bioinformatician at KU Leuven in Belgium, first spotted a problem in 2017. A paper analysing 37,994 DNA samples for Y chromosome variation across ethnic groups in China contained samples from Tibetans, Uyghurs, and Kazakhs. That same year Human Rights Watch and The New York Times reported that Chinese police had begun collecting DNA samples from ordinary Uyghurs to conduct mass surveillance. Moreau was sceptical that the Uyghurs in the paper had given informed consent. Uyghurs and Tibetans have been victims of a severe campaign of repression by the Chinese state. In June 2020 he asked the editor of Human Genetics to retract the paper. Springer Nature—the journal’s publisher—launched an investigation, which ended with the paper’s retraction this December.
Human Genetics had retracted another paper in August 2021 over concerns that non-consensual DNA samples had been used. The International Journal of Legal Medicine, also published by Springer Nature, retracted a third paper in September 2021 for the same reason. However, Moreau says he has identified more than 80 science papers that use Uyghur or Tibetan DNA samples. The publishers include Springer Nature, Elsevier, and John Wiley & Sons, who together make up half of the global science publishing industry. Most have not been retracted yet.
CHINESE SURGEONS USING FORCIBLY HARVESTED ORGANS
While the misuse of non-consensual DNA samples in science papers is a recent phenomenon, other ethical lapses are not. In 2019 Wendy Rogers, a bioethicist at Macquarie University in Sydney, investigated the publications of Chinese transplant surgeons between 2000 and 2017. Her investigation found that 99% (435 publications) failed to report whether organ donors gave consent, and 92.5% (412) failed to disclose whether organs were sourced from executed prisoners. More than two dozen science papers were later retracted as a result.
The same year, the Independent Tribunal Into Forced Organ Harvesting from Prisoners of Conscience in China gave judgment. It concluded that “a very substantial number” of prisoners of conscience in China were being killed for their organs.
DECLARATION OF HELSINKI
Medical research involving human subjects is guided by the Declaration of Helsinki, adopted by the World Medical Association. The retracted papers failed to evidence that the Declaration of Helsinki was complied with by the authors. The declaration requires physicians “to protect the life, health, privacy, and dignity of the human subject”. The consent of any person subjected to research is a necessary part of upholding privacy and human dignity, as paragraph 22 makes clear:
“In any research on human beings, each potential subject must be adequately informed of the aims, methods, sources of funding, any possible conflicts of interest, institutional affiliations of the researcher, the anticipated benefits and potential risks of the study and the discomfort it may entail. The subject should be informed of the right to abstain from participation in the study or to withdraw consent to participate at any time without reprisal…”
Nor is the well-being of any individual human subject to be sacrificed to some greater good, whether that is wider society or science itself. Paragraph 5 of the declaration states that “considerations related to the well-being of the human subject should take precedence over the interests of science and society”.
CONCLUSION
The authors of two of the papers unanimously rejected the retractions, while the authors of the paper most recently retracted were divided—some agreeing to the retraction and others rejecting it. That the majority of physicians involved both failed to provide evidence of compliance with international research norms and continued to defend their work is worrying. The purpose of medical research is to benefit human beings, but that can only happen if physicians respect the human rights of their subjects.
Samuel is a solicitor working in local government. He is an editor and long-time contributor to Human Rights Pulse. His research interests are crimes against humanity, sovereign immunity, and violence against religious minorities.