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Consent Questions

A database may contain Y-chromosome profiles from individuals who were unable to freely give informed consent, Nature News reports.

It adds that the Y-chromosome Haplotype Reference Database (YHRD) includes more than 300,000 anonymous profiles that are used by forensic geneticists and others, but it says ethicists have raised concerns that some contributions to YHRD, notably submissions obtained from Uyghurs in China and Roma in Europe, may not have gotten proper consent.

In particular, Nature News says Yves Moreau from the Catholic University of Leuven in Belgium uncovered a review profiles of Chinese men in YHRD that included authors from the Chinese public security and police forces, which he says suggests it was unlikely that true informed consent was obtained.

According to Nature News, YHRD asks whether informed consent was obtained, but does not check the responses, and one of the database's curators, Lutz Roewer from the Charité in Berlin tells it that profiles have been removed when papers have been retracted, but that the database does not do its own investigations.