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 Annika Inampudi, Science | 08.01.2025
In June, Sara* received a message asking whether she wanted to continue to participate in a massive, multicenter research project led by scientists at Aarhus University in Denmark. The iPsych study, the message said, had sequenced her genetic data from...
The Center for Genetics and Society is delighted to recommend the current edition of GMWatch Review – Number 589. UK-based GMWatch, a long-standing ally, was founded in 1998 by Jonathan Matthews as an independent organization seeking to counter the enormous corporate political power and propaganda of the GMO industry and its supporters. Matthews and Claire Robinson are its directors and managing editors.
CGS works to ensure that social justice, equity, human rights, and democratic governance are front...
By Katherine Drabiak, Journal of Medical Ethics Forum | 08.07.2025
Adapted from Mitochondrial DNA at
National Human Genome Research Institute
Recently, media outlets around the world have been reporting on children born from pronuclear genome transfer (sometimes called “3-parent IVF,” “mitochondrial donation” or “mitochondrial replacement therapy”) at Newcastle Fertility Center...
By Annika Inampudi, Science | 07.10.2025
Before a baby in the United States reaches a few days old, doctors will run biochemical tests on a few drops of their blood to catch certain genetic diseases that need immediate care to prevent brain damage or other serious...