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
  • [21] Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data
    Hudson, Maui
    Garrison, Nanibaa' A.
    Sterling, Rogena
    Caron, Nadine R.
    Fox, Keolu
    Yracheta, Joseph
    Anderson, Jane
    Wilcox, Phil
    Arbour, Laura
    Brown, Alex
    Taualii, Maile
    Kukutai, Tahu
    Haring, Rodney
    Te Aika, Ben
    Baynam, Gareth S.
    Dearden, Peter K.
    Chagne, David
    Malhi, Ripan S.
    Garba, Ibrahim
    Tiffin, Nicki
    Bolnick, Deborah
    Stott, Matthew
    Rolleston, Anna K.
    Ballantyne, Leah L.
    Lovett, Ray
    David-Chavez, Dominique
    Martinez, Andrew
    Sporle, Andrew
    Walter, Maggie
    Reading, Jeff
    Carroll, Stephanie Russo
    NATURE REVIEWS GENETICS, 2020, 21 (06) : 377 - 384
  • [22] Understanding genomic medicine for thoracic aortic disease through the lens of induced pluripotent stem cells
    Singh, Aminder A.
    Shetty, Deeti K.
    Jacob, Aishwarya G.
    Bayraktar, Semih
    Sinha, Sanjay
    FRONTIERS IN CARDIOVASCULAR MEDICINE, 2024, 11
  • [23] Understanding the experiences of Indigenous minorities through the lens of spatial justice: The case of Orang Asli in Peninsular Malaysia
    Dong, Masni Mat
    Midmore, Peter
    Plotnikova, Maria
    REGIONAL SCIENCE POLICY AND PRACTICE, 2022, 14 (05): : 1223 - +
  • [25] A Critical Understanding of Inclusion in Oral Microbiome Research through the Lens of Racial Capitalism
    Lala, Rizwana
    COMMUNITY DENTAL HEALTH, 2024, 41 (01) : 70 - 74
  • [26] Expectations and directions for Reading Research Quarterly: Broadening the lens
    Readence, JE
    Barone, DM
    READING RESEARCH QUARTERLY, 1996, 31 (01) : 8 - 10
  • [27] Through the lens of ideology: Asymmetry in expectations of movie quality
    Giersch, Jason
    SOCIAL SCIENCE JOURNAL, 2023,
  • [28] Understanding Science Through the Computational Lens
    Karp, Richard M.
    JOURNAL OF COMPUTER SCIENCE AND TECHNOLOGY, 2011, 26 (04) : 569 - 577
  • [29] Understanding Science Through the Computational Lens
    Richard M. Karp
    Journal of Computer Science and Technology, 2011, 26 : 569 - 577
  • [30] Understanding Science Through the Computational Lens
    Richard M.Karp
    Journal of Computer Science & Technology, 2011, 26 (04) : 569 - 577