通过本土视角的基因组研究:理解期望。

IF 7.7 2区 生物学 Q1 GENETICS & HEREDITY Annual review of genomics and human genetics Pub Date : 2019-08-31 Epub Date: 2019-03-20 DOI:10.1146/annurev-genom-083118-015434
Nanibaa' A Garrison, Māui Hudson, Leah L Ballantyne, Ibrahim Garba, Andrew Martinez, Maile Taualii, Laura Arbour, Nadine R Caron, Stephanie Carroll Rainie
{"title":"通过本土视角的基因组研究:理解期望。","authors":"Nanibaa' A Garrison,&nbsp;Māui Hudson,&nbsp;Leah L Ballantyne,&nbsp;Ibrahim Garba,&nbsp;Andrew Martinez,&nbsp;Maile Taualii,&nbsp;Laura Arbour,&nbsp;Nadine R Caron,&nbsp;Stephanie Carroll Rainie","doi":"10.1146/annurev-genom-083118-015434","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":8231,"journal":{"name":"Annual review of genomics and human genetics","volume":"20 ","pages":"495-517"},"PeriodicalIF":7.7000,"publicationDate":"2019-08-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1146/annurev-genom-083118-015434","citationCount":"101","resultStr":"{\"title\":\"Genomic Research Through an Indigenous Lens: Understanding the Expectations.\",\"authors\":\"Nanibaa' A Garrison,&nbsp;Māui Hudson,&nbsp;Leah L Ballantyne,&nbsp;Ibrahim Garba,&nbsp;Andrew Martinez,&nbsp;Maile Taualii,&nbsp;Laura Arbour,&nbsp;Nadine R Caron,&nbsp;Stephanie Carroll Rainie\",\"doi\":\"10.1146/annurev-genom-083118-015434\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><p>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.</p>\",\"PeriodicalId\":8231,\"journal\":{\"name\":\"Annual review of genomics and human genetics\",\"volume\":\"20 \",\"pages\":\"495-517\"},\"PeriodicalIF\":7.7000,\"publicationDate\":\"2019-08-31\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://sci-hub-pdf.com/10.1146/annurev-genom-083118-015434\",\"citationCount\":\"101\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Annual review of genomics and human genetics\",\"FirstCategoryId\":\"99\",\"ListUrlMain\":\"https://doi.org/10.1146/annurev-genom-083118-015434\",\"RegionNum\":2,\"RegionCategory\":\"生物学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"2019/3/20 0:00:00\",\"PubModel\":\"Epub\",\"JCR\":\"Q1\",\"JCRName\":\"GENETICS & HEREDITY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Annual review of genomics and human genetics","FirstCategoryId":"99","ListUrlMain":"https://doi.org/10.1146/annurev-genom-083118-015434","RegionNum":2,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2019/3/20 0:00:00","PubModel":"Epub","JCR":"Q1","JCRName":"GENETICS & HEREDITY","Score":null,"Total":0}
引用次数: 101

摘要

土著学者正在根据其独特的文化背景,并在其人民创造和接受的以主权为基础的治理模式下,带头采取行动,改善获得遗传和基因组研究和保健的机会。过去,由于缺乏标准化的指导方针和机构伙伴关系,土著人民参与基因组研究受到阻碍,从而造成群体伤害。本文对加拿大、新西兰、澳大利亚和美国有关土著人民的研究指南进行了比较分析。分析的目标是确定需要注意的领域,支持土著主导的治理,促进制定对土著人民具有国际意义的基因组研究和保健示范研究政策框架。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
Genomic Research Through an Indigenous Lens: Understanding the Expectations.

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.

求助全文
通过发布文献求助,成功后即可免费获取论文全文。 去求助
来源期刊
CiteScore
14.90
自引率
1.10%
发文量
29
期刊介绍: Since its inception in 2000, the Annual Review of Genomics and Human Genetics has been dedicated to showcasing significant developments in genomics as they pertain to human genetics and the human genome. The journal emphasizes genomic technology, genome structure and function, genetic modification, human variation and population genetics, human evolution, and various aspects of human genetic diseases, including individualized medicine.
期刊最新文献
PIK3CA-Related Disorders: From Disease Mechanism to Evidence-Based Treatments. RNA Sequencing in Disease Diagnosis. The Myriad Decision at 10. The Role of Cilia and the Complex Genetics of Congenital Heart Disease. Toward Realizing the Promise of AI in Precision Health Across the Spectrum of Care.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1