Imprimir Republish

Good practices

Signs of forced consent

Suspicion that ethnic groups were coerced into providing data and biological samples calls 96 forensic genetics articles into question

peeterv / Getty Images

The hard work of geneticist and bioinformatician Yves Moreau, from the Catholic University of Leuven, Belgium, has led to the retraction of 30 scientific articles since 2019. The retracted studies all used genetic or biometric data from ethnic minorities and vulnerable populations in China that were collected via ambiguous means. In some cases, it was not possible to guarantee that the research subjects provided biological material voluntarily or that the study was approved by the ethics committee of a recognized scientific institution. Others were supported by informed consent forms, through which the participants declared that they were informed of the scope of the research and agreed to participate, but which they may have been forced to sign under duress, rendering them meaningless. The suspicion surrounding the articles is based on the environment of political repression in which the research was conducted and the listing of state security agents among the coauthors.

According to Moreau, Chinese police use a national DNA database, biometric information, and surveillance methods such as CCTV and facial recognition to monitor the Uyghur Muslim community in the northwestern province of Xinjiang. They use the same strategies to monitor the inhabitants of Tibet, a region controlled by China since the 1950s. “It is part of the architecture of social control, and it’s a very effective psychological pressure tool,” Moreau told The Washington Post.

In February, the journal Molecular Genetics & Genomic Medicine announced the retraction of 18 articles identified as suspicious by Moreau, acknowledging that there were “inconsistencies between the consent documentation and the research reported.” Another recent retraction was a 2022 paper published in PLOS ONE in which Chinese researchers collected blood samples from hundreds of Tibetans, concluding that genetic markers on their X chromosomes could be useful for forensic identification and paternity testing. Moreau alerted the PLOS ONE editors that Chinese security forces may have participated in the data collection process, with human rights organizations denouncing a government program that was enforcing the compulsory collection of DNA samples from Tibetan populations. He asked them to investigate whether the individuals who provided blood samples had given informed consent. The article was retracted just three months later. According to a statement issued by the journal, documentation provided by the authors was not sufficient to eliminate doubts about the authenticity of the informed consent or to prove that the study was approved by an ethics committee.

The speed at which PLOS ONE addressed the case is not the norm among scientific journals. Moreau and his group issued similar warnings about more than a hundred articles, and at least 70 of them remain under investigation more than two years later, with no conclusion reached on whether they should be retracted. The journals in question argue that the cases are highly complex. “The inordinate delays by many publishers in issuing decisions amount to editorial misconduct,” said Moreau in an article on his efforts published in Nature in January.

There have been cases where editors considered the allegation unfounded and closed the investigation. The publisher MDPI declared that it found no ethical flaws in seven articles from its journal Genes that were questioned by Moreau. One of the papers described the genetic origins of the Hui people, another Muslim ethnic group from northern China. Several of the authors work for the Shanghai Academy of Forensic Sciences, which is part of China’s Ministry of Justice. “It is not unusual for police to help facilitate forensic population-genetics research,” Dennis McNevin of the University of Technology Sydney, Australia, coauthor of an article named as suspect by Moreau, told Nature. The paper in question was published in the journal Scientific Reports in 2018 and was based on the genetic analysis of 1,842 people from four ethnic groups in China. It has not been retracted, but in 2022, the publisher Springer Nature made a correction removing the (anonymized) data of participants that appeared in the article’s supplementary information, because consent had not been obtained.

Moreau’s commitment to the fight against what he calls the “genomic surveillance” of ethnic minorities began in 2016, when he learned that the Kuwaiti government had started a program to collect and catalog the genetic profiles of its citizens and visitors. He raised the issue with the European Society of Human Genetics and asked them to speak out against the practice. As a result of the negative repercussions, the program was eventually canceled by the country’s government. In the same year, he was informed that a DNA database was being developed as part of the passport registration process in Xinjiang, where Uyghurs have been the target of mass surveillance and detention. He decided to look into the scientific literature and found dozens of articles describing the genetic profiles of ethnic minority groups in China. He also found that more than 20% of published research on populational forensic genetics in China from 2011 to 2018 focused on Uyghurs, even though they make up less than 1% of the population.

Last November, Moreau was given an award by Einstein Foundation Berlin for “advocating for ethical standards in the utilization of human DNA data.” The influence of his work can be seen in policy changes many scientific publishers have made in relation to vulnerable groups. Although it did not retract any of the articles disputed by Moreau, MDPI instituted a new requirement in mid-2021 for additional scrutiny of studies involving vulnerable groups.

The existence of these suspicious articles raises an uncomfortable question: to what extent is the genetic data available in major international repositories, often used by other researchers, obtained without consent? Formally, records originating from retracted articles are removed from these databases. The International Society of Forensic Genetics (ISFG) Forensic Databases Advisory Board released a report in February 2023 suggesting that data removal could be expanded and that database curators should make assessments on a case-by-case basis, discarding data whenever there is a high chance that informed consent was not obtained. One downside to this measure is that ethnic minority groups become less represented in genetic databases.

Republish