In lamenting the “broken promise that undermines human genome research”, this journal implies that researchers have a right to access information across databases (see Nature 590, 198–201; 2021). In our view, this problematically frames ‘equity’ and ‘progress’ for scientists and dismisses the rights of those who contributed the DNA. As Indigenous geneticists, we remind researchers of the broken promise to extend medical benefits to communities whose genomic data are publicly available.
The genomes of Indigenous people are sought for their unique variation: new genotype–phenotype associations in isolated, small populations are used to advance precision medicine. We take issue with the fact that the Human Genome Diversity Project publicly shares with industries that profit from the ‘big data’ economy genomic information gleaned from central-south American Indigenous individuals (K. Fox N. Engl. J. Med. 383, 411–413; 2020). Meanwhile, wide disparities persist in the health of Indigenous people, owing to intractable power inequities, including in research, that precision medicine is unlikely to address (K. S. Tsosie et al. Nature Rev. Genet. 20, 497–498; 2019).
We contend that the FAIR Principles (see go.nature.com/2nqzcxo) for data sharing grant too much decision-making authority to researchers outside of tribal governances. To understand the duty to steward data, look instead to the CARE Principles (collective benefit, authority to control, responsibility and ethics; see go.nature.com/3vsenhk). Data are not a gift. At best, they are ‘on loan’, and hence revocable if misused. Data are a responsibility not an entitlement.
Nature 591, 529 (2021)