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

被引：0

作者：

Calac, Alec J. ^{[1
]}

Gasca, Luis R. ^{[2
]}

Swain, William H. ^{[2
]}

机构：

[1] Univ Calif San Diego, Sch Med, 9500 Gilman Dr, San Diego, CA 92093 USA

[2] Mayo Clin, Rochester, MN USA

来源：

JOURNAL OF MEDICAL INTERNET RESEARCH | 2025年 / 27卷

关键词：

American Indian; tribal public health; data sovereignty; ethics; information dissemination; Indigenous peoples; public health surveillance; privacy; data sharing; deidentification; data anonymization; public health ethics; data governance;

D O I：

10.2196/77249

中图分类号：

R19 [保健组织与事业（卫生事业管理）];

学科分类号：

摘要：

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.

引用

页数：3

共 15 条

[1]

[Anonymous], 2025, Issue brief: building a tribal public health workforce

[2]

[Anonymous], 2022, National Indian Health Board Resolution 22-07: support for legislation expanding tribal self-governance in the Department of Health and Human Services

[3]

ASPE Office of Health Policy, 2019, The Special Diabetes Program for Indians: estimates of Medicare savings

[4] Vaccine Passports and Indian Country: Nothing Fast About It [J].

Calac, Alec J. ;

Hoss, Aila .

PUBLIC HEALTH REPORTS, 2022, 137 (04) :637-642

[5] CDC Deployments to State, Tribal, Local, and Territorial Health Departments for COVID-19 Emergency Public Health Response - United States, January 21-July 25, 2020 [J].

Dirlikov, Emilio ;

Fechter-Leggett, Ethan ;

Thorne, Stacy L. ;

Worrell, Caitlin M. ;

Smith-Grant, Jennifer C. ;

Chang, Jonathan ;

Oster, Alexandra M. ;

Bjork, Adam ;

Young, Stanley ;

Perez, Alvina U. ;

Aden, Tricia ;

Anderson, Mark ;

Farrall, Susan ;

Jones-Wormley, Jaime ;

Walters, Katherine Hendricks ;

LeBlanc, Tanya T. ;

Kone, Rebecca Greco ;

Hunter, David ;

Cooley, Laura A. ;

Krishnasamy, Vikram ;

Fuld, Jennifer ;

Luna-Pinto, Carolina ;

Williams, Tanya ;

O'Connor, Ann ;

Nett, Randall J. ;

Villanueva, Julie ;

Oussayef, Nadia L. ;

Walke, Henry T. ;

Shugart, Jill M. ;

Honein, Margaret A. ;

Rose, Dale A. .

MMWR-MORBIDITY AND MORTALITY WEEKLY REPORT, 2020, 69 (39) :1398-1403

[6] Barriers and Opportunities for Tribal Access to Public Health Data to Advance Health Equity [J].

Field, Carrie ;

Price, Sarah ;

Locklear, A. C. .

JOURNAL OF LAW MEDICINE & ETHICS, 2024, 52 :39-42

[7] Conducting Research with Tribal Communities: Sovereignty, Ethics, and Data-Sharing Issues [J].

Harding, Anna ;

Harper, Barbara ;

Stone, Dave ;

O'Neill, Catherine ;

Berger, Patricia ;

Harris, Stuart ;

Donatuto, Jamie .

ENVIRONMENTAL HEALTH PERSPECTIVES, 2012, 120 (01) :6-10

[8] Nurturing Innovation at the Roots: The Success of COVID-19 Vaccination in American Indian and Alaska Native Communities [J].

Haroz, Emily E. ;

Kemp, Christopher G. ;

O'Keefe, Victoria M. ;

Pocock, Katherine ;

Wilson, David R. ;

Christensen, Loretta ;

Walls, Melissa ;

Barlow, Allison ;

Hammitt, Laura .

AMERICAN JOURNAL OF PUBLIC HEALTH, 2022, 112 (03) :383-387

[9]

Indigenous data science education, Indigidata

[10] Indigenous Research Ethics Requirements: An Examination of Six Tribal Institutional Review Board Applications and Processes in the United States [J].

Kuhn, Nicole S. ;

Parker, Myra ;

Lefthand-Begay, Clarita .

JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS, 2020, 15 (04) :279-291

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