Title

Realizing the Self-Determination Goals of Indigenous People in Genetics Research

Publication Date:
Updated:

Collection Editor(s):

Collection Editor(s)
Name & Degree
Vanessa Y. Hiratsuka, PhD, MPH
Work Title/Institution
Co-Director of Research and Evaluation, Assistant Professor of Clinical and Translational Research, Center for Human Development, University of Alaska Anchorage

Introduction

Self-determination and tribal sovereignty are core concepts in the lives and histories of Indigenous Peoples. Within the United States, the peoples of the American Indian and Alaska Native tribes are recognized as both a racial group and a political entity. As of April 2021, the United States Bureau of Indian Affairs federally recognizes 574 tribes as Indian entities that are eligible to receive services from the United States. The U.S. Constitution recognizes tribes as sovereign nations with the right to self-determination and grants Congress the authority to interact with Indian tribes. This right to self-determination includes authority over how and what type of research may be conducted within tribal communities and how, when, and who controls data access, use, and reporting on results. This collection provides an introduction to the ELSI literature at the intersection of genomics and Indigenous Peoples in clinical, public health, and community contexts.

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Self-determination and tribal sovereignty are core concepts in the lives and histories of Indigenous Peoples. Within the United States, the peoples of the American Indian and Alaska Native tribes are recognized as both a racial group and a political entity. As of April 2021, the United States Bureau of Indian Affairs federally recognizes 574 tribes as Indian entities that are eligible to receive services from the United States. The U.S. Constitution recognizes tribes as sovereign nations with the right to self-determination and grants Congress the authority to interact with Indian tribes. This right to self-determination includes authority over how and what type of research may be conducted within tribal communities and how, when, and who controls data access, use, and reporting on results. This collection provides an introduction to the ELSI literature at the intersection of genomics and Indigenous Peoples in clinical, public health, and community contexts.

In the United States, a history of unethical research practices, assimilationist policies, eugenics campaigns, forced removal, and genocide complicate the relationships between Indigenous People and the genomic sciences. There is an emphasis on individual autonomy in U.S. medical ethics, with these principles reinforced in the Belmont Report and the 2018 revised Common Rule. However, given the small numeric size of some tribes, researchers who collect tribal affiliation data are capable of using an individual’s genomic information to make statistical inferences about their entire tribe. As a result of these unique circumstances, precision medicine and genomic research with Indigenous Peoples have inherent legal and ethical dimensions that concern data storage, ownership, access and consent, and intellectual property rights. Practical considerations about how data are used in the context of research, policy, and practice must be grounded within Indigenous spirituality, social ties, histories of scientific exploitation and bio-colonialism, and Indigenous-led and responsive community based participatory research.

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Indigenous data sovereignty
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Frameworks for enhancing equitable research relationships with Indigenous communities and Peoples
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Indigenous perspectives on genetic research
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Community engagement and participatory research practices
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Tags
Indigenous Peoples
Genetics Research
data sovereignty
Indigenous Communities
Community Engagement
Alaska Native research

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About ELSIhub Collections

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