Centers for American Indian and Alaska Native Health, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Institute for Society and Genetics, College of Letters and Science, University of California, Los Angeles, Los Angeles, California, USA.
Hum Biol. 2020 Jul 9;91(3):189-208. doi: 10.13110/humanbiology.91.3.04.
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.
迄今为止，一些遗传研究提供了医学益处，但缺乏一个明确的途径，使代表性不足背景的人受益。从历史上看，包括纳瓦霍人（Diné）在内的土著人民一直对缺乏利益、对 DNA 样本的滥用、缺乏协商以及忽视文化和传统知识方式表示担忧。1996 年，纳瓦霍民族人类研究审查委员会成立后不久，纳瓦霍民族就认识到对遗传研究的担忧日益增加，2002 年他们对人类遗传研究研究暂停。该禁令有效地保护了他们的公民免受潜在遗传研究的伤害。尽管暂停了禁令，但一些遗传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遗传研究历史，作者对涉及纳瓦霍人的遗传或遗传学相关研究出版物进行了文献回顾，从 1926 年到 2018 年确定了 79 篇文章。据他们所知，没有已知的文献综述全面审查了纳瓦霍社区的遗传研究历史。本综述将遗传研究文章分为以下一般类别：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、遗传性疾病以及群体遗传学和迁移。作者评估了每篇文章中报告的方法，描述了报告的纳瓦霍个体数量，记录了学术和部落批准声明，并注意到研究是否考虑了 Diné 文化价值观。有几项研究集中于严重联合免疫缺陷病、人口历史、神经病、白化病以及影响纳瓦霍人的眼病和皮肤病。作者将与遗传学和健康相关的 Diné 认知方式与西方科学概念联系起来，以承认指导 Diné 人民的复杂哲学和信仰体系，并承认土著科学。他们还鼓励研究人员考虑具有潜在潜力的文化观点和传统知识，以得出更有力的结论，并更好地了解、合乎道德且尊重科学。
