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 Yelena Biberman and Jonathan D. Moreno, Bioethics Forum | 04.16.2024
A quiet biological revolution in warfare is underway. The genome is emerging as a new domain of conflict. The level of destruction that only nuclear weapons could previously achieve is fast becoming as accessible as a cyberattack.
Now for the...
By Jorge Barrera and Rachel Houlihan, CBC | 04.09.2024
A Canadian DNA laboratory knowingly delivered prenatal paternity test results that routinely identified the wrong biological fathers — ruling out the real dads — and left a trail of shattered lives around the globe, a CBC News investigation has found...
By Timnit Gebru and Émile P. Torres, First Monday | 04.14.2024
The stated goal of many organizations in the field of artificial intelligence (AI) is to develop artificial general intelligence (AGI), an imagined system with more intelligence than anything we have ever seen. Without seriously questioning whether such a system can...
By Carey Gillan, UnSpun | 03.18.2024
A Mexican standoff with the United States turned into a Mexican smack-down this month with the release of Mexico’s formal rebuttal to US efforts to overturn limits Mexico has ordered on the use of genetically modified (GM) corn and the...