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本文引用的文献

1
Dying in Darkness: Deviations From Data Sharing Ethics in the US Public Health System and the Data Genocide of American Indian and Alaska Native Communities.在黑暗中消亡:美国公共卫生系统中数据共享伦理的背离以及美国印第安人和阿拉斯加原住民社区的数据种族灭绝
J Med Internet Res. 2025 Mar 26;27:e70983. doi: 10.2196/70983.
2
Barriers and Opportunities for Tribal Access to Public Health Data to Advance Health Equity.部落获取公共卫生数据以促进健康公平的障碍和机遇。
J Law Med Ethics. 2024;52(S1):39-42. doi: 10.1017/jme.2024.45. Epub 2024 Jul 12.
3
American Indian and Alaska Native Life Expectancy: Writing a New Narrative.美国印第安人和阿拉斯加原住民的预期寿命:书写新的篇章。
JAMA. 2023 Dec 5;330(21):2053-2054. doi: 10.1001/jama.2023.22614.
4
Data Equity in American Indian/Alaska Native Populations: Respecting Sovereign Nations' Right to Meaningful and Usable COVID-19 Data.美国印第安/阿拉斯加原住民人口的数据公平性:尊重主权国家获取有意义且可用的新冠病毒疾病(COVID-19)数据的权利。
Am J Public Health. 2022 Oct;112(10):1416-1420. doi: 10.2105/AJPH.2022.307043.
5
Vaccine Passports and Indian Country: Nothing Fast About It.疫苗护照与印第安人保留地:此事并无捷径可走。
Public Health Rep. 2022 Jul-Aug;137(4):637-642. doi: 10.1177/00333549221094557. Epub 2022 Jun 1.
6
Nurturing Innovation at the Roots: The Success of COVID-19 Vaccination in American Indian and Alaska Native Communities.从根源上培育创新:美国印第安人和阿拉斯加原住民社区新冠疫苗接种的成功
Am J Public Health. 2022 Mar;112(3):383-387. doi: 10.2105/AJPH.2021.306635.
7
CDC Deployments to State, Tribal, Local, and Territorial Health Departments for COVID-19 Emergency Public Health Response - United States, January 21-July 25, 2020.美国疾病控制与预防中心向州、部落、地方和地区卫生部门部署应对 COVID-19 紧急公共卫生反应的情况-2020 年 1 月 21 日至 7 月 25 日。
MMWR Morb Mortal Wkly Rep. 2020 Oct 2;69(39):1398-1403. doi: 10.15585/mmwr.mm6939a3.
8
Indigenous Research Ethics Requirements: An Examination of Six Tribal Institutional Review Board Applications and Processes in the United States.本土研究伦理要求:对美国六个部落机构审查委员会申请和程序的考察。
J Empir Res Hum Res Ethics. 2020 Oct;15(4):279-291. doi: 10.1177/1556264620912103. Epub 2020 Apr 1.
9
Conducting research with tribal communities: sovereignty, ethics, and data-sharing issues.与部落社区合作开展研究:主权、伦理和数据共享问题。
Environ Health Perspect. 2012 Jan;120(1):6-10. doi: 10.1289/ehp.1103904. Epub 2011 Sep 2.

部落公共卫生数据的责任治理:美国公共卫生系统中的数据共享伦理与常见挑战

Responsible Governance of Tribal Public Health Data: Data Sharing Ethics and Common Challenges in the US Public Health System.

作者信息

Calac Alec J, Gasca Luis R, Swain William H

机构信息

School of Medicine, University of California, San Diego, 9500 Gilman Drive, San Diego, CA, 92093, United States, 1 (858) 534-2230.

Mayo Clinic, Rochester, MN, United States.

出版信息

J Med Internet Res. 2025 Jun 19;27:e77249. doi: 10.2196/77249.

DOI:10.2196/77249
PMID:40537098
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC12202236/
Abstract

In their viewpoint, Schmit and colleagues thoughtfully discuss tribal public authority, as well as barriers and facilitators to the responsible use of data generated by or collected from members of sovereign American Indian and Alaska Native Nations. Key topics not covered by the authors that warrant discussion include tribal public health workforce development, data systems infrastructure, and federal facilitation of tribal self-governance programs. These additional topics will better contextualize the ethical, legal, and social issues specific to American Indian and Alaska Native public health practice.

摘要

在施密特及其同事看来,他们审慎地探讨了部落公共权力,以及美国印第安主权国家和阿拉斯加原住民国家成员所产生或收集的数据在负责任使用方面的障碍与促进因素。作者未涵盖但值得讨论的关键主题包括部落公共卫生劳动力发展、数据系统基础设施以及联邦政府对部落自治项目的推动。这些额外主题将更好地把美国印第安人和阿拉斯加原住民公共卫生实践中特有的伦理、法律和社会问题置于具体情境中。