Academic paper based on Uyghur genetic data retracted over ethical concerns; The Guardian, December 29, 2023

Amy Hawkins , The Guardian; Academic paper based on Uyghur genetic data retracted over ethical concerns

"The retraction notice said the article had been withdrawn at the request of the journal that had published it, Forensic Science International: Genetics, after an investigation revealed that the relevant ethical approval had not been obtained for the collection of the genetic samples.

Mark Munsterhjelm, a professor at the University of Windsor, in Ontario, who specialises in racism in genetic research, said the fact that the paper had been published at all was “typical of the culture of complicity in forensic genetics that uncritically accepts ethics and informed consent claims with regards to vulnerable populations”.

Concerns have also been raised about a paper in a journal sponsored by China’s ministry of justice. The study, titled Sequencing of human identification markers in an Uyghur population, analysed Uyghur genetic data based on blood samples collected from individuals in the capital of Xinjiang, in north-west China. Yves Moreau, a professor of engineering at the University of Leuven, in Belgium, who focuses on DNA analysis, raised concerns that the subjects in the study may not have freely consented to their DNA samples being used. He also argued that the research “enables further mass surveillance” of Uyghur people."

Ethical questions raised in search for Sardinian centenarians' secrets; Guardian, 8/12/16

Stephanie Kirchgaessner, Guardian; Ethical questions raised in search for Sardinian centenarians' secrets:

"Some say thousands of Sardinian research subjects never agreed that their samples could be sold or used by a for-profit company when they signed a medical consent agreement at the time the database was accumulating samples...

The conflict has raised the kind of thorny ethical questions that are likely to become more pervasive as scientists tap into the promise of massive DNA databases to learn more about disease. Should a private company be able to profit from the study of a population’s DNA, when the DNA was voluntarily donated? The deal also raises uncomfortable questions for local critics: why did Shardna go bust to begin with?...

The question now is whether participants like Maria Tegas or her children will ever gain from the research that has put her corner of Sardinia on the map. When Cerrone was asked whether he believed Sardinians ought to benefit in the future from any potentially lucrative medical advancements that might emerge, the executive demurs. Tiziana has already “given back” to the community when it bought the database for €258,000, including all the outstanding debts."