Precious DNA

^{Image by Kuzzat Altay from Unsplash}

Uyghurs, a predominantly Muslim minority in China, are mainly located in the autonomous region of Xinjiang. The Chinese government has pursued an aggressive settlement policy in this region since 1949, with the percentage of Han Chinese in the region increasing from five to forty percent in the second half of the 20th century. Since 2014, the Uyghurs have been subject to persecution and re-education – various sources have estimated that at least one million Uyghurs have been interned in “re-education camps” under the pretext of fighting terrorism. Human rights organizations repeatedly draw attention to allegations of forced labor, forced sterilizations to limit births, and restrictions on religious freedom.

The West is entangled in the oppression of the Uyghurs through the use of forced labor by global corporations such as Nike or VW. Biotechnology companies are also involved. The US company Thermo Fisher Scientific has been criticized for supplying Chinese security agencies with technology for DNA-based surveillance. In January, the company announced it would no longer sell DNA identification kits in Tibet, where the technology is also used for surveillance. Over the past six years, China has collected 900,000 to 1.2 million DNA samples from Tibetan adults and children - around a third of the region's population. In other regions, however, Thermo Fisher Scientific continues to supply the Chinese security authorities with sequencing equipment and DNA kits.

Unethical cooperation

The exploitation of Uyghurs also extends into scientific research. State-collected genetic data from Uyghurs is repeatedly used for academic research projects that are published in prestigious journals and internationally accessed databases. As reported by The New York Times, Chinese scientists and security officials have collaborated with members of the European scientific community on DNA phenotyping. This technology provides clues to the external characteristics of strangers based on DNA traces. In a 2019 study, for example, genetic and biometric data from Uyghurs was used to find gene variants related to facial shapes. The study’s first authors, Ziyi Xiong and Gabriela Dankova, are both affiliated with Erasmus University in Rotterdam (NL). Xiong was also working at the Beijing Genomics Institute at the time of publication. Another co-author is the German geneticist Manfred Kayser, one of the leading developers of DNA phenotyping technology and professor at the Erasmus University in Rotterdam. In addition to other researchers from China, scientists from the US, Australia, and South America are involved in the study. 

The article is based on data from 858 participants in the “Xinjiang Uyghur Study,” who are said to have given “written consent.” According to reports from those affected, the claims of informed consent from research subjects are dubious, as many people are unable to object to samples being taken as part of mandatory “health checks.” Abduweli Ayup, a Uyghur linguist who was imprisoned in a camp in western Xinjiang for over a year in 2013, told the journal Nature about forced examinations in which he had signed consent letters to say that he was voluntarily taking part in the blood sampling. “Nobody says ‘no,’” Ayup said, even outside the prison, because people are afraid of being arrested.

Criticism of scientific journals

Belgian professor of engineering Yves Moreau from the University of Leuven is a tireless critic of the unethical handling of DNA samples from Chinese minorities. In 2016 he became aware that DNA profiles were being created in Xinjiang as part of the regular passport registration process and offered his expertise to the Chinese branch of Human Rights Watch. Since then, he has been alerting editors of genetics journals to questionable articles and to the fact that ethics claims cannot be trusted when Chinese security agencies are involved in research. Moreau says scientific publishers should not accept papers if the collection of biometric data, including DNA and facial scans, is part of a system of repression. 

As Nature reported, in 2022 Moreau noticed a study in the journal PLOS One on the genetics of Tibetans with many indications that Chinese security forces could have been involved in the work. Among other things, the article described the collection and storage of test subjects’ blood samples on reference cards, which is a common method used by police authorities. He also noticed that co-author Atif Adnan, who previously worked in China, is now affiliated with the Naif Arab University of Security Sciences. Moreau asked the US-based editorial team to review the study.

Three months later, PLOS retracted the study, stating that the editors had concerns about the consent form and ethical approval procedures. However, by January 2024, only 12 of the 96 articles criticized by Moreau had been retracted, with 18 more added in February. In most cases, the editors' decision is still pending – for more than three years in the case of some articles. Moreau says he has found hundreds of other suspect articles where he still needs to alert the responsible journals.

Problematic data sets

In addition to scientific journals, public DNA databases, like the Y Chromosome Haplotype Reference Database (YHRD), have also been criticized by Moreau and others. The YHRD was developed by employees of the Charité University Hospital in Berlin, Germany, and collects DNA markers on the Y chromosome for forensic applications. The database is used by investigating authorities worldwide to determine the alleged biogeographical origin of unknown suspects from DNA traces, among other uses. It now contains the genetic profiles of around 350,000 people who have been assigned to 37 “metapopulations,” meaning groups of people of certain geographical or ethnic origin. For the “China” sub-database, data from 33 published population genetic studies and 62 direct entries are currently available via the website. These references also include controversial genetic studies on Uyghurs and Tibetans. 

Until recently, the YHRD was hosted on a server owned by Charité, but the institution denied responsibility for its contents, stating that it hosted the database but did not own or operate it. In March of this year, the operators of the website, former Charité employees Sascha Willuweit and Lutz Roewer, announced a transfer to a new server, which, according to the website's terms of use, is located in Chicago.

The YHRD website now states that “informed consent and/or specific approval from a recognized ethics committee” is required for all data collected from February 2022 onwards. This does not apply to older data. Moreover, this requirement does not solve the problem of the lack of credibility of documents from ethics institutions when cooperating with Chinese security authorities.

If Western scientists are serious about ethical standards and human rights, they should examine all data sets created by other researchers very carefully before using and citing them.

This article was originally published as “Begehrte DNA” in issue 269 (May 2024) of the German-language journal Gen-ethischer Informationsdienst (GID); translated by the author.

Dr. Isabelle Bartram is a Program Director at Gen-ethisches Netzwerk (Gen-ethical Network), a Berlin-based nonprofit organization advocating for the responsible use and governance of human genetics. In collaboration with feminist and ecological movements, GeN enables nuanced debates that focus on the social impacts of these technologies.