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      Genomic Research Through an Indigenous Lens: Understanding the Expectations

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          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 genomic research 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.

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          Author and article information

          Journal
          Annual Review of Genomics and Human Genetics
          Annu. Rev. Genom. Hum. Genet.
          Annual Reviews
          1527-8204
          1545-293X
          March 20 2019
          August 30 2019
          March 20 2019
          August 30 2019
          : 20
          : 1
          Affiliations
          [1 ]Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington 98101, USA
          [2 ]Faculty of Māori and Indigenous Studies, University of Waikato, Hamilton 3240, New Zealand;
          [3 ]Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia V6H 3N1, Canada;
          [4 ]James E. Rogers College of Law, University of Arizona, Tucson, Arizona 85721, USA
          [5 ]Native Nations Institute, Udall Center for Studies in Public Policy, University of Arizona, Tucson, Arizona 85719, USA;, ,
          [6 ]Center for Health Research, Kaiser Permanente, Honolulu, Hawaii 96817, USA;
          [7 ]Department of Surgery and Northern Medical Program, University of British Columbia, Prince George, British Columbia V2N 4Z9, Canada
          [8 ]Mel and Enid Zuckerman College of Public Health, University of Arizona, Tucson, Arizona 85724, USA
          Article
          10.1146/annurev-genom-083118-015434
          © 2019

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