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与土著人民进行遗传研究:关于美国治理和监督的观点

Nanibaa' A Garrison^1,2,3, Stephanie Russo Carroll^4,5

¹Traditional, ancestral and unceded territory of the Gabrielino/Tongva peoples, Institute for Society and Genetics, University of California, Los Angeles, Los Angeles, CA, United States.

Frontiers in research metrics and analytics

|December 11, 2023

概括

原住民正在加强对基因组研究的治理. 这项研究探讨了他们对道德问题的看法,并加强了对文化适当研究的监督.

科学领域:

基因组学就是基因组学.
生物伦理学生物伦理学
土著研究土著研究.

背景情况:

原住民越来越多地宣称对涉及其公民的基因组研究的治理.
这一转变需要理解与美国印第安人,阿拉斯加原住民和夏威夷原住民社区进行研究的伦理考虑和监管框架.

研究的目的:

探讨部落领导人,临床医生,研究人员,政策制定者和部落研究审查委员会成员在美国土著人民的基因研究中的伦理问题上的观点.
确定土著治理,机构关系,研究批准期望和制定土著治理的协议的考虑因素.

主要方法:

采用了社区参与的研究方法.
与多个利益相关者进行了42次半结构面试,包括部落领导人,临床医生,研究人员,决策者和部落研究审查委员会成员.

主要成果:

参与者对各种监督方法以及土著人民与研究人员之间的关系和协议的性质提出了担忧.
关键发现突出了对需要关注的基因组数据现有治理结构的差距.
具体重点领域包括土著治理,维护主权的机构关系,研究批准期望和制定土著治理的协议.

结论:

这些发现将为政策制定和土著人民制定战略提供信息,以加强研究监督.
重点是促进由土著治理指导的伦理和文化上适当的基因组研究实践.

关键词:

原住民原住民的原住民数据治理数据治理伦理研究的伦理研究基因组研究是基因组研究.部落主权是部落的主权.

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