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在大流行病基因组学中赋予公平的数据使用伙伴关系和原住民数据主权。

Empowering Equitable Data Use Partnerships and Indigenous Data Sovereignties Amid Pandemic Genomics.

机构信息

Center for Indigenous Cancer Research, Roswell Park Comprehensive Cancer Center, Buffalo, NY, United States.

Center for Applied Social Research, University of Oklahoma, Norman, OK, United States.

出版信息

Front Public Health. 2021 Nov 11;9:742467. doi: 10.3389/fpubh.2021.742467. eCollection 2021.

Abstract

The COVID-19 pandemic has inequitably impacted Indigenous communities in the United States. In this emergency state that highlighted existing inadequacies in US government and tribal public health infrastructures, many tribal nations contracted with commercial entities and other organization types to conduct rapid diagnostic and antibody testing, often based on proprietary technologies specific to the novel pathogen. They also partnered with public-private enterprises on clinical trials to further the development of vaccines. Indigenous people contributed biological samples for assessment and, in many cases, broadly consented for indefinite use for future genomics research. A concern is that the need for crisis aid may have placed Indigenous communities in a position to forego critical review of data use agreements by tribal research governances. In effect, tribal nations were placed in the unenviable position of trading short-term public health assistance for long-term, unrestricted access to Indigenous genomes that may disempower future tribal sovereignties over community members' data. Diagnostic testing, specimen collection, and vaccine research is ongoing; thus, our aim is to outline pathways to trust that center current and future equitable relationship-building between tribal entities and public-private interests. These pathways can be utilized to increase Indigenous communities' trust of external partners and share understanding of expectations for and execution of data protections. We discuss how to navigate genomic-based data use agreements in the context of pathogen genomics. While we focus on US tribal nations, Indigenous genomic data sovereignties relate to global Indigenous nations regardless of colonial government recognition.

摘要

新冠疫情大流行在美国对原住民社区造成了不公平的影响。在这种凸显美国政府和部落公共卫生基础设施现有不足的紧急状态下,许多部落与商业实体和其他组织类型签订合同,进行快速诊断和抗体检测,这些检测通常基于针对新型病原体的专有技术。他们还与公私合营企业合作开展临床试验,以推进疫苗的开发。原住民提供了生物样本进行评估,在许多情况下,还广泛同意将其无限期用于未来的基因组学研究。人们担心的是,对危机援助的需求可能使原住民社区处于放弃部落研究治理机构对数据使用协议进行严格审查的地位。实际上,部落国家处于一种不利的地位,即通过短期的公共卫生援助换取对原住民基因组的长期、不受限制的访问,这可能会削弱未来部落对其成员数据的主权。诊断测试、样本采集和疫苗研究仍在继续;因此,我们的目的是概述建立信任的途径,这些途径以部落实体和公私利益之间当前和未来的公平关系为中心。这些途径可以用来增加原住民社区对外部合作伙伴的信任,并更好地理解对数据保护的期望和执行情况。我们讨论了如何在病原体基因组学的背景下处理基于基因组的数据使用协议。虽然我们专注于美国部落国家,但无论殖民政府是否承认,原住民的基因组数据主权都与全球的原住民国家有关。

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