Genomic Research Through an Indigenous Lens: Understanding the Expectations

被引:133
|
作者
Garrison, Nanibaa' A. [1 ,2 ]
Hudson, Maui [3 ]
Ballantyne, Leah L. [4 ]
Garba, Ibrahim [5 ,6 ]
Martinez, Andrew [6 ]
Taualii, Maile [7 ]
Arbour, Laura [4 ,8 ]
Caron, Nadine R. [9 ,10 ,11 ,12 ]
Rainie, Stephanie Carroll [6 ,13 ]
机构
[1] Seattle Childrens Res Inst, Treuman Katz Ctr Pediat Bioeth, Seattle, WA 98101 USA
[2] Univ Washington, Dept Pediat, Seattle, WA 98101 USA
[3] Univ Waikato, Fac Maori & Indigenous Studies, Hamilton 3240, New Zealand
[4] Univ British Columbia, Dept Med Genet, Vancouver, BC V6H 3N1, Canada
[5] Univ Arizona, James E Rogers Coll Law, Tucson, AZ 85721 USA
[6] Univ Arizona, Udall Ctr Studies Publ Policy, Nat Nations Inst, Tucson, AZ 85719 USA
[7] Kaiser Permanente, Ctr Hlth Res, Honolulu, HI 96817 USA
[8] Univ Victoria, Div Med Sci, Victoria, BC V8W 2Y2, Canada
[9] Univ British Columbia, Dept Surg, Prince George, BC V2N 4Z9, Canada
[10] Univ British Columbia, Northern Med Program, Prince George, BC V2N 4Z9, Canada
[11] Univ British Columbia, Ctr Excellence Indigenous Hlth, Vancouver, BC V6T 1Z3, Canada
[12] BC Canc Agcy, Canadas Michael Smith Genome Sci Ctr, Vancouver, BC V5Z 1L3, Canada
[13] Univ Arizona, Mel & Enid Zuckerman Coll Publ Hlth, Tucson, AZ 85724 USA
关键词
Indigenous; genomics; data sovereignty; data governance; bioethics; policy; GENETIC RESEARCH; BIOBANKING; VIEWS; COMMUNITIES; INDIANS; PEOPLE; ETHICS; MAORI;
D O I
10.1146/annurev-genom-083118-015434
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
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.
引用
收藏
页码:495 / 517
页数:23
相关论文
共 50 条
  • [41] Understanding the Australian Indigenous Entrepreneurs Through Narratives
    Krivokapic-Skoko, Branka
    Trudgett, Tracey
    Pearce, Sonya
    Morrison, Mark
    Collins, Jock
    Basu, P. K.
    PROCEEDINGS OF THE 12TH EUROPEAN CONFERENCE ON RESEARCH METHODOLOGY FOR BUSINESS AND MANAGEMENT STUDIES, 2013, : 169 - 177
  • [42] Behavioral Economics: A New Lens for Understanding Genomic Decision Making
    Moore, Scott Emory
    Ulbrich, Holley H.
    Hepburn, Kenneth
    Holaday, Bonnie
    Mayo, Rachel
    Sharp, Julia
    Pruitt, Rosanne H.
    JOURNAL OF NURSING SCHOLARSHIP, 2018, 50 (03) : 241 - 248
  • [43] A framework for enhancing ethical genomic research with Indigenous communities
    Claw, Katrina G.
    Anderson, Matthew Z.
    Begay, Rene L.
    Tsosie, Krystal S.
    Fox, Keolu
    Garrison, Nanibaa' A.
    NATURE COMMUNICATIONS, 2018, 9
  • [44] A framework for enhancing ethical genomic research with Indigenous communities
    Katrina G. Claw
    Matthew Z. Anderson
    Rene L. Begay
    Krystal S. Tsosie
    Keolu Fox
    Nanibaa’ A. Garrison
    Nature Communications, 9
  • [45] Understanding the dark side of gamified interactions on short-form video platforms: Through a lens of expectations violations theory
    Zhou, Fei
    Lin, Youhai
    Mou, Jian
    Cohen, Jason
    Chen, Sihua
    TECHNOLOGICAL FORECASTING AND SOCIAL CHANGE, 2023, 186
  • [46] Genomic and metagenomic research with Peruvian indigenous communities.
    Obregon-Tito, Alexandra J.
    Tito, Raul Y.
    Fuentes-Delgado, Duilio
    Spicer, Paul
    Lewis, Cecil M.
    AMERICAN JOURNAL OF PHYSICAL ANTHROPOLOGY, 2012, 147 : 228 - 228
  • [47] Mapping a route to Indigenous engagement in cancer genomic research
    Henare, Kimiora L.
    Parker, Kate E.
    Wihongi, Helen
    Blenkiron, Cherie
    Jansen, Rawiri
    Reid, Papaarangi
    Findlay, Michael P.
    Lawrence, Benjamin
    Hudson, Maui
    Print, Cristin G.
    LANCET ONCOLOGY, 2019, 20 (06): : E327 - E335
  • [48] Are inflation expectations anchored in India? A peek through the credibility lens
    Patnaik, Anuradha
    INTERNATIONAL ECONOMICS AND ECONOMIC POLICY, 2025, 22 (01)
  • [49] Rights of Indigenous Children: Reading Children's Literature through an Indigenous Knowledges Lens
    Peterson, Shelley Stagg
    Robinson, Red Bear
    EDUCATION SCIENCES, 2020, 10 (10): : 1 - 14
  • [50] Understanding Instructional Quality Through a Relational Lens
    Berlin, Rebekah
    Cohen, Julie
    ZDM-MATHEMATICS EDUCATION, 2018, 50 (03): : 367 - 379