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 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 established a moratorium on human genetic research studies in 2002. 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. In order to understand the history of genetic research involving Navajo people, we conducted a literature review of 79 genetic or genetic-related research publications that involved Navajo people from the years 1925 to 2018. In this review, we divided the genetic research studies into the following general classifications: a) bacteria or virus genetics studies, b) blood and human leukocyte antigen, c) complex diseases, d) forensics, e) hereditary diseases, and f) population genetics and migration. We evaluated the methods for each study, described the number of Navajo individuals included in each study, recorded the academic or tribal approval statements, and noted whether the study considered Diné cultural values. Several studies focused on Severe Combined Immunodeficiency Disease, population history, neuropathy, albinism, eye and skin disorders that affect Navajo people. We found genetic research publications involving Navajo people spanning over the course of 93 years. To our knowledge, no known literature reviews have examined the history of genetic research in the Navajo community. In our Discussion, we 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. We encourage researchers consider cultural perspectives and traditional knowledge that has the potential to create stronger conclusions and better informed, ethical, and respectful science.
Begay, Rene L.; Garrison, Nanibaa’ A.; Sage, Franklin; Bauer, Mark; Knoki-Wilson, Ursula; Begay, David H.; Becenti-Pigman, Beverly; and Claw, Katrina G., "Weaving the Strands of Life (Iiná Bitł’ool): History of Genetic Research Involving Navajo People" (2020). Human Biology Open Access Pre-Prints. 165.