Perspectives on Genetic Research: Results From a Survey of Navajo Community Members.
Perspectives on Genetic Research: Results From a Survey of Navajo Community Members.
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DOI：
10.3389/fgene.2021.734529
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发表时间：
2021
影响因子：
3.7
通讯作者：
Sage F
中科院分区：
文献类型：
--
作者：
Claw KG;Dundas N;Parrish MS;Begay RL;Teller TL;Garrison NA;Sage F
纳瓦霍民族在2002年暂停了基因研究，部分原因是对历史上的不信任、剥削、有限的专业知识和资源以及缺乏遗传学政策的担忧。纳瓦霍部落领导人、科学家和政策专家正在探索解除禁令的可能性，制定基因研究政策，并讨论其潜在的健康影响。这项研究旨在确定纳瓦霍人对遗传研究的主要关注点，需求和愿望。我们对纳瓦霍人进行了一项调查，以评估暂停和研究的知识，衡量对遗传研究的兴趣，并量化适当的遗传研究主题，以了解广泛的观点和关注。我们进行了描述性统计，并使用卡方检验检验相关分类变量之间的关联。我们假设，对暂停和健康研究有更多了解的个人增加了支持和参与遗传研究的可能性。共有690份来自纳瓦霍受访者的调查进行了分析。其中，63%的受访者表示不知道纳瓦霍族暂停基因研究。在某些条件下，如社区参与、社区领导人的审查和批准、对影响社区的疾病的研究以及对取消暂停的支持，了解暂停和愿意捐赠生物标本用于研究之间存在正相关（p值< 0.001）。我们发现，年龄，性别，宗教/精神信仰，或机构隶属关系与遗传学和相关主题的知识水平，参与有关的信仰，和捐赠的生物标本之间没有显着差异。有趣的是，居住在纳瓦霍族以外的受访者与暂停的知识呈正相关，听说过纳瓦霍族的遗传学讨论，以及哈瓦苏派部落提起的诉讼。大多数受访者同意，在允许对纳瓦霍民族进行基因研究之前，制定一项包含文化知识（56%）、有益（56%）和数据共享保护（59%）的政策非常重要。总的来说，很大一部分受访者（46%）不确定是否取消禁令，而是希望更多的遗传学教育来评估其潜在的影响。研究结果可以为未来的指导方针和政策提供信息。
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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影响因子：
3.7
作者：
Hiratsuka, Vanessa Y.;Beans, Julie A.;Spicer, Paul G.
通讯作者：
Spicer, Paul G.
影响因子：
16.6
作者：
Claw KG;Anderson MZ;Begay RL;Tsosie KS;Fox K;Garrison NA;Summer internship for INdigenous peoples in Genomics (SING) Consortium
通讯作者：
Summer internship for INdigenous peoples in Genomics (SING) Consortium
影响因子：
5
作者：
Chadwick，Jennifer Q.;Copeland，Kenneth C.;Wharton，David F.
通讯作者：
Wharton，David F.
影响因子：
3.1
作者：
Garrison, Nanibaa' A.
通讯作者：
Garrison, Nanibaa' A.
DOI：
10.2307/3563819
发表时间：
2003-07-01
期刊：
IRB
影响因子：
--
作者：
Bowekaty, Malcolm B;Davis, Dena S
通讯作者：
Davis, Dena S