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Genomic Research Through an Indigenous Lens: Understanding the Expectations.
Garrison, Nanibaa' A; Hudson, Maui; Ballantyne, Leah L; Garba, Ibrahim; Martinez, Andrew; Taualii, Maile; Arbour, Laura; Caron, Nadine R; Rainie, Stephanie Carroll.
Afiliación
  • Garrison NA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, Seattle, Washington 98101, USA.
  • Hudson M; Department of Pediatrics, University of Washington, Seattle, Washington 98101, USA; email: nanibaa@uw.edu.
  • Ballantyne LL; Faculty of Maori and Indigenous Studies, University of Waikato, Hamilton 3240, New Zealand; email: maui.hudson@waikato.ac.nz.
  • Garba I; Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia V6H 3N1, Canada; email: leah.ballantyne@ubc.ca.
  • Martinez A; James E. Rogers College of Law, University of Arizona, Tucson, Arizona 85721, USA.
  • Taualii M; Native Nations Institute, Udall Center for Studies in Public Policy, University of Arizona, Tucson, Arizona 85719, USA; email: garbai@email.arizona.edu, andrewmartinez@email.arizona.edu, scrainie@email.arizona.edu.
  • Arbour L; Native Nations Institute, Udall Center for Studies in Public Policy, University of Arizona, Tucson, Arizona 85719, USA; email: garbai@email.arizona.edu, andrewmartinez@email.arizona.edu, scrainie@email.arizona.edu.
  • Caron NR; Center for Health Research, Kaiser Permanente, Honolulu, Hawaii 96817, USA; email: maile.m.taualii@kp.org.
  • Rainie SC; Department of Medical Genetics, University of British Columbia, Vancouver, British Columbia V6H 3N1, Canada; email: leah.ballantyne@ubc.ca.
Annu Rev Genomics Hum Genet ; 20: 495-517, 2019 08 31.
Article en En | MEDLINE | ID: mdl-30892943
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.
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Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Genómica / Grupos de Población Tipo de estudio: Guideline / Prognostic_studies Límite: Humans País/Región como asunto: America do norte / Oceania Idioma: En Revista: Annu Rev Genomics Hum Genet Asunto de la revista: GENETICA / GENETICA MEDICA Año: 2019 Tipo del documento: Article País de afiliación: Estados Unidos

Texto completo: 1 Colección: 01-internacional Banco de datos: MEDLINE Asunto principal: Genómica / Grupos de Población Tipo de estudio: Guideline / Prognostic_studies Límite: Humans País/Región como asunto: America do norte / Oceania Idioma: En Revista: Annu Rev Genomics Hum Genet Asunto de la revista: GENETICA / GENETICA MEDICA Año: 2019 Tipo del documento: Article País de afiliación: Estados Unidos