Title

Biocolonialism and Other “Western”-Centered Bioethical Failures Onto Indigenous Peoples

Publication Date:
Updated:

Collection Editor(s):

Collection Editor(s)
Name & Degree
Krystal S. Tsosie, PhD, MPH, MA
Work Title/Institution
Presidential Postdoctoral Fellow, School of Life Sciences, Arizona State University, Tempe, AZ; Co-Founder, ELSI and Policy Director, Native BioData Consortium, Eagle, Butte, SD

Introduction

There are complex, historical reasons why global Indigenous peoples have largely not engaged in genetics and genomics research. For example, if we look to the 1990s and early 2000s, global Indigenous peoples expressed concerns related to: 1) the co-optation and commercial extraction of their genomic data; 2) the biological reification of Indigeneity amid misconstructions of genetic ancestry, blood quantum, and race, tied to resource dispossession; 3) the cultural incongruencies between Indigenous ethics and worldviews and “Western” bioethical frameworks; and 4) that innovations stemming from their peoples’ genomic data would benefit them last. These concerns are sustained today.

SHOW MORE

There are complex, historical reasons why global Indigenous peoples have largely not engaged in genetics and genomics research. For example, if we look to the 1990s and early 2000s, global Indigenous peoples expressed concerns related to: 1) the co-optation and commercial extraction of their genomic data; 2) the biological reification of Indigeneity amid misconstructions of genetic ancestry, blood quantum, and race, tied to resource dispossession; 3) the cultural incongruencies between Indigenous ethics and worldviews and “Western” bioethical frameworks; and 4) that innovations stemming from their peoples’ genomic data would benefit them last. These concerns are sustained today.

Indigenous peoples and scholars have voiced their concerns about sample extraction from the onset of the modern sequencing era. The risks associated with their inclusion in large-scale genomic diversity projects has only increased concomitantly with more deeply interrogative whole-genome approaches. Will present-day genome diversity projects (e.g., the All of Us Research Program, the Human Pangenome Reference Consortium) learn from their predecessors or will they merely replicate legacies of inequitable extraction and biocolonialism?

The first section of this collection is an essential reading list of infamous projects that still negatively impact Indigenous peoples. These should be considered fundamental to understanding the pitfalls of broad consenting, which has now, cyclically, become the norm yet again in this, our Big Data Era of openly accessible data. The readings also highlight the history of the Human Genome Diversity Project and Genographic Project which, among many concerns, were flagged for their exploitation and extraction of DNA from disempowered, Indigenous peoples of the Global South. The biomarkers of these peoples were made openly available on public databases and serve as the Indigenous genetic ancestry reference populations that inform many population inferences.

The second section addresses Indigenous constructions of group/communitarian consent, autonomy, agency, and authority, which are incongruent with “Western” bioethical frameworks such as the Belmont Report (a foundational document for The Federal Policy for the Protection of Human Subjects or the “Common Rule”) (this concept is further expanded in section three). Indigenous views of open data sharing, stewardship, and equity over data of all types is also a focus of this section.

The last section highlights Indigenous-centered approaches to genomic research which are in alignment with the principles of Indigenous data sovereignty. It is important to understand and question who is creating bioethical frameworks about Indigenous peoples. If this positionality is not transparent from the beginning, we risk repeating scenarios in which biomedical researchers create the rules of engagement that unilaterally benefit them. For instance, while many scientific agencies have looked to the FAIR Guiding Principles of data governance (findability, accessibility, interoperability, and reuse) to guide multimillion dollar-funded projects that aim to reduce health inequities, those principles center researchers’ access to data, not the Indigenous peoples and communities who provided the data. Therefore, reducing health inequities also entails empowering Indigenous peoples to self-govern research decisions that ultimately impact them.

Positionality Statement: These suggested readings are centered from the perspective of an Indigenous citizen of a U.S. federally recognized Tribal nation. I acknowledge that this list may not adequately address the concerns of peoples from Indigenous communities who are unrecognized or disempowered by other colonial nations. I also frame this list as a “Western” trained scientist working in the domains of human genetics and precision health. In alignment with those fields, the reading list omits concerns related to, albeit, arbitrarily defined “non-human” data, which also impacts Indigenous peoples’ health and stewardship. Ałk’éí danidlį (They are all related).

SHOW LESS
Collection Header
Biocolonialism and Data Extraction 101
Body

Collection Header
Incongruence of “Western” Approaches with Indigenous Ethics
Body
Collection Header
Respecting Indigenous Data Sovereignty Beyond the Belmont Report
Body
Collection Header
Indigenous-Centered Approaches
Body
Tags
Indigenous
genetic data
genetic ancestry
decolonization
Indigenous data

Share

About ELSIhub Collections

ELSIhub Collections are essential reading lists on fundamental or emerging topics in ELSI, curated and explained by expert Collection Editors, often paired with ELSI trainees. This series assembles materials from cross-disciplinary literatures to enable quick access to key information.

ELSIhub Collections