Genomic Research Through an Indigenous Lens: Understanding the Expectations

Author:

Garrison Nanibaa’ A.12,Hudson Māui3,Ballantyne Leah L.4,Garba Ibrahim56,Martinez Andrew6,Taualii Maile7,Arbour Laura48,Caron Nadine R.91011,Rainie Stephanie Carroll612

Affiliation:

1. Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington 98101, USA

2. Department of Pediatrics, University of Washington, Seattle, Washington 98101, USA;

3. Faculty of Māori and Indigenous Studies, University of Waikato, Hamilton 3240, New Zealand;

4. Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia V6H 3N1, Canada;

5. James E. Rogers College of Law, University of Arizona, Tucson, Arizona 85721, USA

6. Native Nations Institute, Udall Center for Studies in Public Policy, University of Arizona, Tucson, Arizona 85719, USA;, ,

7. Center for Health Research, Kaiser Permanente, Honolulu, Hawaii 96817, USA;

8. Division of Medical Sciences, University of Victoria, Victoria, British Columbia V8W 2Y2, Canada;

9. Department of Surgery and Northern Medical Program, University of British Columbia, Prince George, British Columbia V2N 4Z9, Canada

10. Centre for Excellence in Indigenous Health, University of British Columbia, Vancouver, British Columbia V6T 1Z3, Canada

11. Canada's Michael Smith Genome Sciences Centre, BC Cancer Agency, Vancouver, British Columbia V5Z 1L3, Canada;

12. Mel and Enid Zuckerman College of Public Health, University of Arizona, Tucson, Arizona 85724, USA

Abstract

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.

Publisher

Annual Reviews

Subject

Genetics (clinical),Genetics,Molecular Biology

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