BusinessGenomics data: the broken promise is to Indigenous people

Genomics data: the broken promise is to Indigenous people

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The Summer Internship for Indigenous Peoples (SING) Consortium hosts workshops to have interaction college students and tribal members in genomics.Credit: Rene Begay

In lamenting the “broken promise that undermines human genome research”, this journal implies that researchers have a proper to entry data throughout databases (see Nature 590, 198–201; 2021). In our view, this problematically frames ‘equity’ and ‘progress’ for scientists and dismisses the rights of those that contributed the DNA. As Indigenous geneticists, we remind researchers of the broken promise to prolong medical advantages to communities whose genomic knowledge are publicly out there.

The genomes of Indigenous people are sought for his or her distinctive variation: new genotype–phenotype associations in remoted, small populations are used to advance precision drugs. We take subject with the indisputable fact that the Human Genome Diversity Project publicly shares with industries that revenue from the ‘big data’ economic system genomic data gleaned from central-south American Indigenous people (K. Fox N. Engl. J. Med. 383, 411–413; 2020). Meanwhile, vast disparities persist in the well being of Indigenous people, owing to intractable energy inequities, together with in analysis, that precision drugs is unlikely to tackle (K. S. Tsosie et al. Nature Rev. Genet. 20, 497–498; 2019).

We contend that the FAIR Principles (see go.nature.com/2nqzcxo) for knowledge sharing grant an excessive amount of decision-making authority to researchers exterior of tribal governances. To perceive the obligation to steward knowledge, look as an alternative to the CARE Principles (collective profit, authority to management, accountability and ethics; see go.nature.com/3vsenhk). Data will not be a present. At finest, they’re ‘on loan’, and therefore revocable if misused. Data are a accountability not an entitlement.



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