We Have “Gifted” Enough: Indigenous Genomic Data Sovereignty in Precision Medicine
By Krystal S. Tsosie, Joseph M. Yracheta, Jessica A. Kolopenuk, and Janis Geary,
The American Journal of Bioethics
| 04. 07. 2021
Photo by Andrew James on Unsplash
In “Obligations of the ‘Gift’: Reciprocity and Responsibility in Precision Medicine,” Lee (2021) rightly points out that disparities in health care access also lead to disparities in precision medicine research participation. Lee (2021) adds that an emphasis on individual consent among research ethics fails to adequately address Indigenous expectations for the governance of research specimens. As Lee summarizes in their conclusion, it is important to account for the ways that “group history and structural inequities” (64) continue to shape 21st century advances in medicine. While Lee frames their discussion within the context of clinical practice and the US healthcare system, our commentary extends consideration of the conditions that impact Indigenous participation in precision medicine research and also the potential benefits derived from it. We argue that Lee’s paper (not unlike much of the field of precision medicine) takes for granted the colonial power relations that shape the aforementioned structural inequities as the basis of Indigenous peoples’ relationship to health care systems. We contend that such erasure of the ongoing resistance...
Related Articles
By Risa Cromer, The Conversation | 07.17.2026
By Emily Packard Dawson and Lainie Friedman Ross , The Hastings Center for Bioethics | 07.16.2026
Major news outlets recently reported – based on a bioRxiv preprint – that scientists had edited genes in human embryos with “startling precision.” The scientists’ decision to release this work ahead of peer review, coupled with the extensive media coverage...
Media coverage of recent developments in embryo gene editing might seem to suggest that gene-edited babies are close to becoming a reality. As tech billionaires eager to profit off of techno-eugenics invest in “designer baby” technologies, attempts to normalize heritable genome editing – which remains unsafe and raises significant ethical and societal concerns – are especially dangerous. It’s worth taking a closer look at these developments and what they mean, in a way that pushes back on narratives normalizing the...
By Roxanne Khamsi, The Atlantic | 07.07.2026
When Ludivine Verboogen and Romain Alderweireldt’s third child was born in Belgium in late 2015, they marveled at his long fingers. Perhaps one day he will be a famous pianist, they thought. But soon Ludivine grew worried that her son...