Weaving the Strands of Life (&lt;em&gt;Iiná Bitł'ool&lt;/em&gt;): History
                    of Genetic Research Involving Navajo People

Begay, Rene L.; Garrison, Nanibaa’ A.; Sage, Franklin; Bauer, Mark C.; Knoki-Wilson, Ursula; Begay, David; Becenti-Pigman, Beverly; Claw, Katrina G.

doi:10.13110/humanbiology.91.3.04

Cited by 12 publications

(11 citation statements)

References 94 publications

(129 reference statements)

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“…Overall, relatively few respondents felt knowledgeable about genetics, though we expected higher frequency given 1) Navajo people monitor familial relationships through k’e, a complex genealogical clan system that delineates how extended family members are related to each other ( Nielson and Zion, 2005 ), 2) there is a history of genetic research being conducted with Navajo people prior to the moratorium ( Begay et al, 2020 ), and 3) there are concerns about the effects of radiation exposure from uranium mining that may contribute to high cancers rates across the NN ( Brugge and Goble, 2002 ). However, in each of these cases, discussions about genetics with the larger community have not necessarily been a focal point.…”

Section: Discussionmentioning

confidence: 99%

“…Within the US, Indigenous people (American Indian and Alaska Native people) experience more health disparities compared to the general population ( Indian Health Service, 2019 ). For Navajo people (known as the Diné, or “The People”), an Indigenous tribe located in the southwestern part of the US, some of these health disparities may be attributed to genetic diseases and conditions ( Lynch et al, 1994 ; Erickson, 1999 ; Li et al, 2002 ; Begay et al, 2020 ). More specifically, Navajo people have been subject to a number of genetic research studies on bacterial or viral genetics, blood and human leukocyte antigens, complex diseases, forensics, hereditary diseases, and population genetics and human migration since 1926 ( Begay et al, 2020 ).…”

Section: Introductionmentioning

confidence: 99%

“…For Navajo people (known as the Diné, or “The People”), an Indigenous tribe located in the southwestern part of the US, some of these health disparities may be attributed to genetic diseases and conditions ( Lynch et al, 1994 ; Erickson, 1999 ; Li et al, 2002 ; Begay et al, 2020 ). More specifically, Navajo people have been subject to a number of genetic research studies on bacterial or viral genetics, blood and human leukocyte antigens, complex diseases, forensics, hereditary diseases, and population genetics and human migration since 1926 ( Begay et al, 2020 ). The Navajo Nation (NN) is the largest tribe in the US with 399,494 enrolled citizens ( Romero, 2021 ) and the land base spans over 27,000 square miles across Arizona, Utah, and New Mexico.…”

Section: Introductionmentioning

confidence: 99%

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Perspectives on Genetic Research: Results From a Survey of Navajo Community Members

et al. 2021

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The Navajo Nation placed a moratorium on genetic research studies in 2002, in part due to concerns about historical distrust, exploitation, limited expertise and resources, and the lack of a genetics policy. Navajo tribal leaders, scientists, and policy experts are exploring the possibility of lifting the moratorium, developing a genetic research policy, and discussing its potential health implications. This study aimed to identify the key concerns, needs, and desires of Navajo people regarding genetic research. We conducted a survey of Navajo individuals to assess knowledge of the moratorium and research, gauge interest in genetic research, and quantify appropriate genetic research topics to understand broad views and concerns. We performed descriptive statistics and tested associations between relevant categorical variables using Chi-square tests. We hypothesized that individuals with more knowledge about the moratorium and health research increased the likelihood of supporting and participating in genetic research. A total of 690 surveys from Navajo respondents were analyzed. Of these, 63% of respondents reported being unaware of the Navajo Nation’s moratorium on genetic research. There were positive associations between those who knew about the moratorium and willingness to donate biospecimens for research under certain conditions, such as community involvement, review and approval by community leaders, research on diseases affecting the community, and support for lifting the moratorium (p-values < 0.001). We found no significant differences between age, gender, religious/spiritual beliefs, or agency affiliation with knowledge levels of genetics and related topics, participation in relation to beliefs, and donation of biospecimens. Interestingly, respondents who resided off the Navajo Nation were positively associated with having knowledge of the moratorium, having heard of discussions of genetics on the Navajo Nation, and the lawsuit filed by the Havasupai Tribe. Most respondents agreed that it was very important to develop a policy that incorporates cultural knowledge (56%), is beneficial (56%), and has data sharing protections (59%) before allowing genetic research on the Navajo Nation. Overall, a large proportion of respondents (46%) were unsure about lifting the moratorium and instead wanted more genetics education to assess its potential implications. The study results can inform the direction of future guidelines and policies.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Perspectives on Genetic Research: Results From a Survey of Navajo Community Members

et al. 2021

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“…These populations have reduced access to genetic testing, 22 and medical mistrust results in underutilization of genetic counseling and testing. [23][24][25][26] As a result of this history, genetic databases are largely composed of individuals of European ancestry. Thus, there is a reduced ability to interpret disease-causing variants in individuals of non-European ancestry.…”

Section: Social Justice and Equitymentioning

confidence: 99%

Points to consider to avoid unfair discrimination and the misuse of genetic information: A statement of the American College of Medical Genetics and Genomics (ACMG)

Seaver

Khushf

King

et al. 2022

Genetics in Medicine

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Disclaimer: This statement is designed primarily as an educational resource for medical geneticists and other clinicians to help them provide quality medical services. Adherence to this statement is completely voluntary and does not necessarily assure a successful medical outcome. This statement should not be considered inclusive of all proper procedures and tests or exclusive of other procedures and tests that are reasonably directed to obtaining the same results. In determining the propriety of any specific procedure or test, clinicians should apply their own professional judgment to the specific clinical circumstances presented by the individual patient or specimen. Clinicians are encouraged to document the reasons for the use of a particular procedure or test, whether or not it is in conformance with this statement. Clinicians also are advised to take notice of the date this statement was adopted, and to consider other medical and scientific information that becomes available after that date. It also would be prudent to consider whether intellectual property interests may restrict the performance of certain tests and other procedures.

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“…Many genetic databases lack ethnic diversity, which hampers efforts to generate equitable healthcare benefits. Some spoke about dilemmas experienced by indigenous peoples [ 51 ], which have led to a strong data sovereignty movement, limiting participation in genetic research [ 52 ]. Addressing ethnic representation was considered desirable for all sectors, and several people discussed ideas to increase uptake.…”

Section: Equitymentioning

confidence: 99%

Genomic health data generation in the UK: a 360 view

et al. 2021

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In the UK, genomic health data is being generated in three major contexts: the healthcare system (based on clinical indication), in large scale research programmes, and for purchasers of direct-to-consumer genetic tests. The recently delivered hybrid clinical/research programme, 100,000 Genomes Project set the scene for a new Genomic Medicine Service, through which the National Health Service aims to deliver consistent and equitable care informed by genomics, while providing data to inform academic and industry research and development. In parallel, a large scale research study, Our Future Health, has UK Government and Industry investment and aims to recruit 5 million volunteers to support research intended to improve early detection, risk stratification, and early intervention for chronic diseases. To explore how current models of genomic health data generation intersect, and to understand clinical, ethical, legal, policy and social issues arising from this intersection, we conducted a series of five multidisciplinary panel discussions attended by 28 invited stakeholders. Meetings were recorded and transcribed. We present a summary of issues identified: genomic test attributes; reasons for generating genomic health data; individuals’ motivation to seek genomic data; health service impacts; role of genetic counseling; equity; data uses and security; consent; governance and regulation. We conclude with some suggestions for policy consideration.

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Weaving the Strands of Life (<em>Iiná Bitł'ool</em>): History of Genetic Research Involving Navajo People

Cited by 12 publications

References 94 publications

Perspectives on Genetic Research: Results From a Survey of Navajo Community Members

Perspectives on Genetic Research: Results From a Survey of Navajo Community Members

Points to consider to avoid unfair discrimination and the misuse of genetic information: A statement of the American College of Medical Genetics and Genomics (ACMG)

Genomic health data generation in the UK: a 360 view

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