An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.
An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.
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DOI：
10.1200/jgo.18.00156
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发表时间：
2020-03
影响因子：
4.5
通讯作者：
CommNETS Collaboration
中科院分区：
文献类型：
--
作者：
Aramoana J;Koea J;CommNETS Collaboration
进行这项调查是为了确定土著人民参与生物银行和基因组研究的障碍。进行了文献综述，以确定报告土著人民生物银行、组织银行和基因组研究经验的研究。有关器官移植或输血献血的研究被排除在外。检索的数据库包括MEDLINE、EMBASE、PubMed、Web of Science和谷歌Scholar，检索日期为2018年6月1日，包括所有可用文献。人工检索所有纳入论文的参考文献列表以及相关综述文章，以确定其他相关研究。采用归纳方法来确定共同主题。17份出版物讨论了新西兰Māori （n = 2）、原住民和托雷斯海峡岛民（n = 3）、夏威夷原住民（n = 4）、阿拉斯加原住民（n = 2）、美国第一民族（n = 2）或多种族（n = 4）的经历。在所有土著人民中，出现了四个主题：土地、祖先、文化和身体物质紧密相连，可以相互作用；组织和血液可以提供关于一个人的重要信息（无论是西方的还是传统的）；标本的所有权——保管人、受托人或监护人；以及研究人员和研究团队的慈善。土著社区，像西方人口一样，关心与处理、治疗和组织所有权有关的问题，以及从标本分析中获得的知识。与许多西方人口不同，土著社区保留了与祖先和传统土地的强烈文化联系，并认为生物标本与这些东西不可分割。
This investigation was undertaken to define the barriers to Indigenous peoples participating in biobanking and genomic research. A literature review was conducted to identify studies reporting on the experience of Indigenous peoples with biobanking, tissue banking, and genomic research. Studies pertaining to organ transplantation or blood donation for transfusion were excluded. The databases searched were MEDLINE, EMBASE, PubMed, Web of Science, and Google Scholar, with all literature available until the search date of June 1, 2018, included. The reference lists of all included papers, as well as related review articles, were manually searched to identify additional relevant studies. An inductive approach was used to identify common themes. Seventeen publications discussed the experiences of New Zealand Māori (n = 2), Aboriginal and Torres Strait Islanders (n = 3), Native Hawaiian (n = 4), Native Alaskan (n = 2), American First Nation (n = 2), or multiple ethnicities (n = 4). Across all Indigenous peoples, four themes emerged: land, ancestors, culture, and bodily substances are powerfully interconnected and can act on each other; tissue and blood can provide important information (both Western and traditional) about a person; the ownership of specimens—custodians, trustees, or guardians; and the beneficence of the researchers and research team. Indigenous communities, like Western populations, are concerned with issues pertaining to handling, treatment, and ownership of tissue as well as knowledge gained from specimen analysis. Unlike many Western populations, Indigenous communities have retained a strong sense of cultural connection to ancestors and traditional lands and view biologic specimens as inseparable from these things.