Journal retracts over dozen ‘unethical’ genetic studies conducted in China on minority groups

A medical journal by a leading American publishing company has retracted more than a dozen genetics studies conducted in China over human rights concerns, making it one of the largest of such retractions to date.

The studies were conducted by different scientists analysing DNA that was collected from China’s vulnerable minority populations including Uyghurs and Tibetans.

The mass retractions were carried out after human rights campaigners pointed out that the oppression of these populations in China may have not allowed participants to freely consent to their samples being taken for the studies.

All the retracted papers were published between 2019 and 2021 in Molecular Genetics & Genomic Medicine (MGGM) – a journal by the American multinational publishing company Wiley.

Bioethicist and geneticist Yves Moreau from Belgium first raised concerns of these papers in March 2021 to MGGM’s editor-in-chief Suzanne Hart.

More than 50 papers in different journals are reportedly still under investigation two years after Dr Moreau first flagged them.

In one DNA study that was latest to be retracted researchers assessed blood samples collected from 120 Tibetans in Lhasa.

The study stated that “all individuals provided written informed consent,” and that the research was approved by the Fudan University’s ethics committee.

However, a retraction notice published on Monday said an ethical review “uncovered inconsistencies between the consent documentation and the research reported; the documentation was not sufficiently detailed to resolve the concerns raised.”

The journal also said in the retraction notice that the consent documentation issued by scientists “did not give approval for data associated with this article to be shared publicly.”

“As a result, the parties have made the decision to retract the article,” the journal noted.

In another retracted study, researchers analysed blood samples from 340 Uyghur individuals in Kashgar, a city in Xinjiang.

The research probing genetic links between Uyghurs across regions was meant to serve as a resource for forensic identification and paternity testing, scientists behind the study said.

Of the nearly 100 papers with ethical concerns that the Belgian flagged, 60 per cent have at least one co-author who works for a law-enforcement entity or a public-security bureau, Nature reported.

Since many of these studies list police officers as involved in sample collection, it also raises concerns whether proper consent was given.

The Article 7 of the International Declaration on Human Genetic Data (UNESCO, IBC 2003) states that genetic data should not be used in any way to discriminate against individuals or groups.

“Every effort should be made to ensure that human genetic data and human proteomic data are not used for purposes that discriminate in a way that is intended to infringe, or has the effect of infringing human rights, fundamental freedoms or human dignity of an individual or for purposes that lead to the stigmatization of an individual, a family, a group or communities,” the declaration says.

Publishers, including Wiley, are updating their informed consent policies to ensure there is extra scrutiny when researchers work on data from potentially vulnerable groups.