Genomic Research Through an Indigenous Lens: Understanding the Expectations

Genomic Research Through an Indigenous Lens: Understanding the Expectations

Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples' engagement with genomicresea...

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Bibliographic Details
Published in:Annual review of genomics and human genetics Vol. 20; no. 1; pp. 495 - 517
Main Authors: Garrison, Nanibaa' A, Hudson, M ui, Ballantyne, Leah L, Garba, Ibrahim, Martinez, Andrew, Taualii, Maile, Arbour, Laura, Caron, Nadine R, Rainie, Stephanie Carroll
Format: Journal Article
Language:English
Published: United States Annual Reviews 31-08-2019
Annual Reviews, Inc
Subjects:
bioethics
data governance
data sovereignty
genomics
Indigenous
Native peoples
policy
data governance
genomics
data sovereignty
Indigenous
bioethics
policy
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Summary:Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples' engagement with genomicresearch was hampered by a lack of standardized guidelines and institutional partnerships, resulting in group harms. This article provides a comparative analysis of research guidelines from Canada, New Zealand, Australia, and the United States that pertain to Indigenous peoples. The goals of the analysis are to identify areas that need attention, support Indigenous-led governance, and promote the development of a model research policy framework for genomic research and health care that has international relevance for Indigenous peoples.
Bibliography:ObjectType-Article-1
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ISSN:1527-8204
1545-293X
DOI:10.1146/annurev-genom-083118-015434