促进部落社区的伦理、法律和社会影响研究：本土基因组研究伦理中心
Fostering Ethical, Legal, and Social Implications Research in Tribal Communities: The Center for the Ethics of Indigenous Genomic Research.
作者信息
Hiratsuka Vanessa Y, Beans Julie A, Reedy Justin, Yracheta Joseph M, Peercy Michael T, Saunkeah Bobby, Woodbury R Brian, O'Leary Marcia, Spicer Paul G
机构信息
Southcentral Foundation, Anchorage, AK, USA.
The University of Oklahoma, Norman, USA.
出版信息
J Empir Res Hum Res Ethics. 2020 Oct;15(4):271-278. doi: 10.1177/1556264619872640. Epub 2019 Sep 9.
Abstract
Genomic research raises unique ethical concerns among Alaska Native and American Indian (AN/AI) people and their communities. The Center for the Ethics of Indigenous Genomic Research (CEIGR) was created to foster research that takes these concerns into account while considering the sovereign status of AN/AI tribal nations. Relationships developed within CEIGR have allowed for effective, collaborative research among individuals who come from diverse cultures, political and historical backgrounds, and academic disciplines, and who work for organizations with varying resources, capacities, and expectations. The CEIGR framework may inform other groups seeking to conduct social science research related to genomic research with tribal people and their communities.
摘要
基因组研究在阿拉斯加原住民和美洲印第安人及其社区中引发了独特的伦理问题。本土基因组研究伦理中心（CEIGR）的设立旨在推动相关研究，该研究在考虑阿拉斯加原住民和美洲印第安人部落国家主权地位的同时，将这些问题纳入考量。CEIGR内部建立的关系使得来自不同文化、政治和历史背景以及学术学科的个人之间能够进行有效的合作研究，这些人还为资源、能力和期望各不相同的组织工作。CEIGR框架可能会为其他寻求与部落人民及其社区开展与基因组研究相关的社会科学研究的团体提供参考。
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