Rene Begay, Nanibaa’ Garrison, Franklin Sage, Mark Bauer, Ursula Knoki-Wilson, David Begay, Beverly Becenti-Pigman, Katrina Claw
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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.
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.).