Weaving the Strands of Life (Iiná Bitł’ool): History of Genetic Research Involving Navajo People

4区 生物学 Q2 Medicine
Rene Begay, Nanibaa’ Garrison, Franklin Sage, Mark Bauer, Ursula Knoki-Wilson, David Begay, Beverly Becenti-Pigman, Katrina Claw
{"title":"Weaving the Strands of Life (Iiná Bitł’ool): History of Genetic Research Involving Navajo People","authors":"Rene Begay, Nanibaa’ Garrison, Franklin Sage, Mark Bauer, Ursula Knoki-Wilson, David Begay, Beverly Becenti-Pigman, Katrina Claw","doi":"10.1353/hub.2017.0075","DOIUrl":null,"url":null,"abstract":"To date, some genetic studies offer medical benefits but lack a clear pathway to benefit for people from underrepresented backgrounds. Historically, Indigenous people, including the Diné (Navajo people), have raised concerns about the lack of benefits, misuse of DNA samples, lack of consultation, and ignoring of cultural and traditional ways of knowing. Shortly after the Navajo Nation Human Research Review Board was established in 1996, the Navajo Nation recognized growing concerns about genetic research, and in 2002 they established a moratorium on human genetic research studies. The moratorium effectively has protected their citizens from potential genetic research harms. Despite the placement of the moratorium, some genetic research studies have continued using blood and DNA samples from Navajo people. To understand the history of genetic research involving Navajo people, the authors conducted a literature review of genetic or genetics-related research publications that involved Navajo people, identifying 79 articles from the years 1926 to 2018. To their knowledge, no known literature review has comprehensively examined the history of genetic research in the Navajo community. This review divides the genetic research articles into the following general classifications: bacteria or virus genetics, blood and human leukocyte antigens, complex diseases, forensics, hereditary diseases, and population genetics and migration. The authors evaluated the methods reported in each article, described the number of Navajo individuals reported, recorded the academic and tribal approval statements, and noted whether the study considered Diné cultural values. Several studies focused on severe combined immunodeficiency disease, population history, neuropathy, albinism, and eye and skin disorders that affect Navajo people. The authors contextualize Diné ways of knowing related to genetics and health with Western scientific concepts to acknowledge the complex philosophy and belief system that guides Diné people and recognizes Indigenous science. They also encourage researchers to consider cultural perspectives and traditional knowledge that has the potential to create stronger conclusions and better-informed, ethical, and respectful science.","PeriodicalId":13053,"journal":{"name":"Human Biology","volume":null,"pages":null},"PeriodicalIF":0.0000,"publicationDate":"2020-04-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Human Biology","FirstCategoryId":"99","ListUrlMain":"https://doi.org/10.1353/hub.2017.0075","RegionNum":4,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"Medicine","Score":null,"Total":0}
引用次数: 0

Abstract

To date, some genetic studies offer medical benefits but lack a clear pathway to benefit for people from underrepresented backgrounds. Historically, Indigenous people, including the Diné (Navajo people), have raised concerns about the lack of benefits, misuse of DNA samples, lack of consultation, and ignoring of cultural and traditional ways of knowing. Shortly after the Navajo Nation Human Research Review Board was established in 1996, the Navajo Nation recognized growing concerns about genetic research, and in 2002 they established a moratorium on human genetic research studies. The moratorium effectively has protected their citizens from potential genetic research harms. Despite the placement of the moratorium, some genetic research studies have continued using blood and DNA samples from Navajo people. To understand the history of genetic research involving Navajo people, the authors conducted a literature review of genetic or genetics-related research publications that involved Navajo people, identifying 79 articles from the years 1926 to 2018. To their knowledge, no known literature review has comprehensively examined the history of genetic research in the Navajo community. This review divides the genetic research articles into the following general classifications: bacteria or virus genetics, blood and human leukocyte antigens, complex diseases, forensics, hereditary diseases, and population genetics and migration. The authors evaluated the methods reported in each article, described the number of Navajo individuals reported, recorded the academic and tribal approval statements, and noted whether the study considered Diné cultural values. Several studies focused on severe combined immunodeficiency disease, population history, neuropathy, albinism, and eye and skin disorders that affect Navajo people. The authors contextualize Diné ways of knowing related to genetics and health with Western scientific concepts to acknowledge the complex philosophy and belief system that guides Diné people and recognizes Indigenous science. They also encourage researchers to consider cultural perspectives and traditional knowledge that has the potential to create stronger conclusions and better-informed, ethical, and respectful science.
编织生命之线(Iiná Bitł'ol):涉及纳瓦霍人的基因研究历史
迄今为止,一些基因研究提供了医疗益处,但缺乏明确的途径让代表背景不足的人受益。从历史上看,包括迪内族(纳瓦霍人)在内的土著居民一直对缺乏益处、DNA 样本的滥用、缺乏咨询以及忽视文化和传统认知方式等问题表示担忧。1996 年纳瓦霍部落人类研究审查委员会成立后不久,纳瓦霍部落就意识到人们对基因研究的担忧与日俱增,并于 2002 年暂停了人类基因研究。该暂停令有效地保护了他们的公民免受基因研究的潜在伤害。尽管暂停了基因研究,但一些基因研究仍在继续使用纳瓦霍人的血液和 DNA 样本。为了了解涉及纳瓦霍人的基因研究历史,作者对涉及纳瓦霍人的基因或与基因相关的研究出版物进行了文献综述,确定了 1926 年至 2018 年期间的 79 篇文章。据他们所知,目前还没有已知的文献综述全面考察过纳瓦霍族群的基因研究历史。本综述将基因研究文章分为以下几大类:细菌或病毒遗传学、血液和人类白细胞抗原、复杂疾病、法医学、遗传性疾病以及人口遗传学和迁移。作者评估了每篇文章所报告的方法,描述了所报告的纳瓦霍人的数量,记录了学术和部落批准声明,并指出研究是否考虑了迪奈文化价值观。几项研究的重点是影响纳瓦霍人的严重联合免疫缺陷病、人口史、神经病、白化病以及眼部和皮肤疾病。作者将迪内人对遗传学和健康的认识方式与西方科学概念相结合,承认了指导迪内人的复杂哲学和信仰体系,并承认了土著科学。他们还鼓励研究人员考虑文化观点和传统知识,这些观点和知识有可能得出更有力的结论,并使科学更有依据、更有道德、更受尊重。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 求助全文
来源期刊
Human Biology
Human Biology 生物-生物学
CiteScore
1.90
自引率
0.00%
发文量
88
审稿时长
>12 weeks
期刊介绍: Human Biology publishes original scientific articles, brief communications, letters to the editor, and review articles on the general topic of biological anthropology. Our main focus is understanding human biological variation and human evolution through a broad range of approaches. We encourage investigators to submit any study on human biological diversity presented from an evolutionary or adaptive perspective. Priority will be given to interdisciplinary studies that seek to better explain the interaction between cultural processes and biological processes in our evolution. Methodological papers are also encouraged. Any computational approach intended to summarize cultural variation is encouraged. Studies that are essentially descriptive or concern only a limited geographic area are acceptable only when they have a wider relevance to understanding human biological variation. Manuscripts may cover any of the following disciplines, once the anthropological focus is apparent: human population genetics, evolutionary and genetic demography, quantitative genetics, evolutionary biology, ancient DNA studies, biological diversity interpreted in terms of adaptation (biometry, physical anthropology), and interdisciplinary research linking biological and cultural diversity (inferred from linguistic variability, ethnological diversity, archaeological evidence, etc.).
×
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
确定
请完成安全验证×
copy
已复制链接
快去分享给好友吧!
我知道了
右上角分享
点击右上角分享
0
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 布克学术 All rights reserved.
京ICP备2023020795号-1
ghs 京公网安备 11010802042870号
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术官方微信