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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database's curators, Lutz Roewer from the Charité in Berlin tells it that profiles have been removed when papers have been retracted, but that the database does not do its own investigations.

The Scan

Positive Framing of Genetic Studies Can Spark Mistrust Among Underrepresented Groups

Researchers in Human Genetics and Genomics Advances report that how researchers describe genomic studies may alienate potential participants.

Small Study of Gene Editing to Treat Sickle Cell Disease

In a Novartis-sponsored study in the New England Journal of Medicine, researchers found that a CRISPR-Cas9-based treatment targeting promoters of genes encoding fetal hemoglobin could reduce disease symptoms.

Gut Microbiome Changes Appear in Infants Before They Develop Eczema, Study Finds

Researchers report in mSystems that infants experienced an enrichment in Clostridium sensu stricto 1 and Finegoldia and a depletion of Bacteroides before developing eczema.

Acute Myeloid Leukemia Treatment Specificity Enhanced With Stem Cell Editing

A study in Nature suggests epitope editing in donor stem cells prior to bone marrow transplants can stave off toxicity when targeting acute myeloid leukemia with immunotherapy.