SEEDS
Sharing Essential Education & Data for Sovereignty
The main purpose of this repository is to act as a “one-stop shop” for those who are interested in Indigenous Data Sovereignty and how it relates to the many areas of public health. This repository contains a curated list of resources under the following topics: Health policy, Environmental data, Health equity and social determinants of health, Health education and communication, Epidemiology, Data governance, Surveillance and outbreak response, Disease and interventions. The repository is maintained by the D4I TDR Educational Resources Working Group. If there is a resource that is not included but you think should be, please reach out to us at D4itdr@gmail.com
Database Search
497 results found
· Page 6 of 9
Indigenous Health Equity – Module 1
WeRPN
Indigenous Health Equity – Module 2
WeRPN
Indigenous Health Equity – Module 3
WeRPN
Resilient roots: Indigenous Health Equity
John Hopkins Nursing
Developing Indigenous-Centered Healing, Health, and Wellness Frameworks to Strengthen Indigenous Health Systems, Decolonize Public Health, and Achieve Health Equity
Oré CE, Loerzel E, Marziale E, Parker M. Developing Indigenous-Centered Healing, Health, and Wellness Frameworks to Strengthen Indigenous Health Systems, Decolonize Public Health, and Achieve Health Equity. Am J Public Health. 2025 May;115(5):726-731. doi: 10.2105/AJPH.2024.307958. Epub 2025 Mar 13. PMID: 40080741; PMCID: PMC11983036.
Publication Dates:
2025
Content Types:
Peer reviewed publication
Indigenous Health Equity
Urban Indian Health Institute
Publication Dates:
No Year Listed
Content Types:
Report
Indigenous health equity in health register ascertainment and data quality: a narrative review
Wright, K., Tapera, R.M., Stott, N.S. et al. Indigenous health equity in health register ascertainment and data quality: a narrative review. Int J Equity Health 21, 34 (2022). https://doi.org/10.1186/s12939-022-01635-2
Publication Dates:
2021
Content Types:
Peer reviewed publication
Human Rights Mechanisms to Advance Social Justice & Health Equity in Public Health (A Collaborative Session w/Spirit of 1848 and the American Indian, Alaska Native and Native Hawaiian Caucuses)
B Meier, N Munoz, DA Him - APHA 2016 Annual Meeting & Expo (Oct. 29-Nov. 2, 2016)
Publication Dates:
2016
Content Types:
Conference proceeding/paper
Closing the cancer care gap: cancer disparities among Indigenous peoples globally
Go AE, Guinaran RC, Dee EC. Closing the cancer care gap: cancer disparities among Indigenous peoples globally. Lancet Reg Health West Pac. 2025 Apr 6;57:101543. doi: 10.1016/j.lanwpc.2025.101543. PMID: 40242464; PMCID: PMC12002832.
Publication Dates:
2025
Content Types:
Peer reviewed publication
Improved cancer survival in the Northern Territory: identifying progress and disparities for Aboriginal peoples, 1991-2020
Boyd R, Charakidis M, Burgess CP, Dugdale S, Castillon Jawoyn Katherine Region Nt C, Sutandar D, Wright A. Improved cancer survival in the Northern Territory: identifying progress and disparities for Aboriginal peoples, 1991-2020. Med J Aust. 2025 Jun 2;222(10):517-523. doi: 10.5694/mja2.52656. Epub 2025 Apr 21. PMID: 40259612.
Publication Dates:
2025
Content Types:
Peer reviewed publication
End-of Life Care Disparities Experienced by American Indian and Alaska Natives Peoples: An Analysis of Data from the 2019 Medicare Master Beneficiary Summary File
Anderson E, Goins RT, Abdulsalam R, Jiang L, O'Connell J. End-of Life Care Disparities Experienced by American Indian and Alaska Natives Peoples: An Analysis of Data from the 2019 Medicare Master Beneficiary Summary File. J Palliat Med. 2025 May 28. doi: 10.1089/jpm.2024.0481. Epub ahead of print. PMID: 40425038.
Publication Dates:
2025
Content Types:
Peer reviewed publication
Equity and Inclusion in Assessing Hereditary Cancer Risk: Insights From Excluded Communities, Structured Interviews, and Population Genetics
Geary J, Gerido LH, Gutierrez AM, Dale KJ. Equity and Inclusion in Assessing Hereditary Cancer Risk: Insights From Excluded Communities, Structured Interviews, and Population Genetics. Cancer Control. 2025 Jan-Dec;32:10732748251355825. doi: 10.1177/10732748251355825. Epub 2025 Jun 30. PMID: 40588805; PMCID: PMC12209571.
Publication Dates:
2025
Content Types:
Peer reviewed publication
Network for Public Health Law. Fact Sheet: Data Governance Strategies for State and Tribal nations.
Network for Public Health Law. Fact Sheet: Data Governance Strategies for State and Tribal nations. 2020. Available at: https://www.networkforphl.org/wp-content/uploads/2020/09/Data-Governance-Strategies-for-States-and-Tribal-Nations-.pdf.
Centering Data Sovereignty, Tribal Values, and Practices for Equity in American Indian and Alaska Native Public Health Systems
"Rhodes KL, Echo-Hawk A, Lewis JP, L. Cresci V, E. Satter D, A. Dillard D. Centering Data Sovereignty, Tribal Values, and Practices for Equity in American Indian and Alaska Native Public Health Systems. Public Health Reports®. 2023;139(1_suppl):10S-15S. doi:10.1177/00333549231199477
"
Publication Dates:
2023
Content Types:
Peer reviewed publication
Federal Indian Law as Structural Determinant of Health
Hoss A. Federal Indian Law as a Structural Determinant of Health. J Law Med Ethics. 2019 Dec;47(4_suppl):34-42. doi: 10.1177/1073110519898041. PMID: 31955695.
Publication Dates:
2019
Content Types:
Peer reviewed publication
Best Practices for American Indian and Alaska Native Data Collection
Urban Indian Health Institute. Best Practices for American Indian and Alaska Native Data Collection. Updated on August 26, 2020. https://www.uihi.org/resources/best-practices-for-american-indian-and-alaska-native-data-collection/Last Accessed: June 30, 2025.
Publication Dates:
2020
Content Types:
Web Article
The National Congress of American Indians Resolution #KAN-18-011: Support of US Indigenous Data Sovereignty and Inclusion of Tribes inthe Development of Tribal Data Governance Principles
Joe Garcia. The National Congress of American Indians Resolution #KAN-18-011: Support of US Indigenous Data Sovereignty and Inclusion of Tribes in the Development of Tribal Data Governance Principles. 2018 https://archive.ncai.org/resources/resolutions/support-of-us-indigenous-data-sovereignty-and-inclusion-of-tribes-in-the-development-of-tribal-data. Last Accessed: June 30, 2025.
A Stewardship Framework for the Use of Community Health Data
National Committee on Vital and Health Statistics. A Stewardship Framework for the Use of Community Health Data. December 5, 2012. https://ncvhs.hhs.gov/wp-content/uploads/2014/05/121205lt.pdf
Health Insurance Portability and Accountability Act of 1996 (HIPAA)
Health Insurance Portability and Accountability Act of 1996. 104-191, , 1996-08-21, 110 Stat. 1936 (42 U.S.C. 201 note)
Network for Public Health Law: Tribal Public Health Law Resource Table
No citation available
Developing a Framework to Guide Genomic Data Sharing and Reciprocal Benefits to Developing Countries and Indigenous Peoples
The O’Neill Institute of National and Global Health Law Georgetown University. Developing a Framework to Guide Genomic Data Sharing and Reciprocal Benefits to Developing Countries and Indigenous Peoples; Georgetown University: Washington, DC, USA, 2009.
Indigneous Data Sovereignty Communique
Maiam nayri Wingara Indigenous Data Sovereignty Collective, the Australian Indigenous Governance Institute & the Lowitja Institute. (2023). Indigenous Data Governance Communique. Available at: https://static1.squarespace.com/static/5b3043afb40b9d20411f3512/t/64f7b64b19d9dd4616bf2c75/1693955660219/Indigenous+Data+Governance+Communique+2023.pdf
“Indigenous data and health: Critical approaches to ‘race’/ethnicity and Indigenous data governance”
Cormack, D.; Reid, P.; Kukutai, T.Y. Indigenous data and health: Critical approaches to ‘race’/ethnicity and Indigenous data governance. Public Health 2019, 172, 116–118.
Publication Dates:
2019
Content Types:
Peer reviewed publication
“There’s ‘consent’ and then there’s consent: Mobilising M¯aori and Indigenous research ethics to problematise the western biomedical model.”
"West-McGruer, K.Y. There’s ‘consent’ and then there’s consent: Mobilising M¯aori and Indigenous research ethics to problematise
the western biomedical model. J. Soc. 2020, 56, 184–196."
Publication Dates:
2020
Content Types:
Peer reviewed publication
Global Alliance for Genomics and Health: Data Privacy and Security Policy.
"Global Alliance for Genomics and Health. Global Alliance for Genomics and Health: Data Privacy and Security Policy. 2019.
Available online: https://www.ga4gh.org/product/data-privacy-and-security-policy/"
Exploring pathways to trust: A tribal perspective on data sharing
"James, R.; Tsosie, R.; Sahota, P.; Parker, M.; Dillard, D.; Sylvester, I.; Lewis, J.; Klejka, J.; Muzquiz, L.; Olsen, P.; et al. Exploring
pathways to trust: A tribal perspective on data sharing. Genet. Med. 2014, 16, 820–826."
Publication Dates:
2014
Content Types:
Peer reviewed publication
Tribal Public Health Law, Nation Indian Health Board
N/A
Publication Dates:
No Year Listed
Content Types:
Webpage
Global Recognition of Indigeneity in Health: A Landmark Moment for Indigenous People
N/A
Publication Dates:
2025
Content Types:
Web Article
Indigenous Peoples and Cultural Safety in Public Health
Megan Carlson, Nicole Redvers, “Indigenous Peoples and Cultural Safety in Public Health”, American Journal of Public Health 113, no. 10 (October 1, 2023): pp. 1059-1063.
Publication Dates:
2023
Content Types:
Peer reviewed publication
Indigenous Health Ethics, An Appeal to Human Rights
Intercultural Dialogue in Bioethics: Volume 3
Questioning the ethics of evidence-based practice for Indigenous health and social settings in Australia
Joanne Luke, Ebony Verbunt, Angela Zhang, Muriel Bamblett, Gabrielle Johnson, Connie Salamone, David Thomas, Sandra Eades, Lina Gubhaju, Margaret Kelaher, Amanda Jones - Questioning the ethics of evidence-based practice for Indigenous health and social settings in Australia: BMJ Global Health 2022;7:e009167.
Publication Dates:
2022
Content Types:
Peer reviewed publication
Federal Policies That Contribute to Racial and Ethnic Health Inequities and Potential Solutions for Indigenous Children, Families, and Communities
Gordon, H. S. J., Around Him, D., & Jordan, E. (2022). Federal policies that contribute to racial and ethnic health inequities and potential solutions for Indigenous children, families, and communities. Comments to the National Academy of Sciences Ad Hoc Committee on Racial and Ethnic Health Inequities. Child Trends.
Publication Dates:
2022
Content Types:
Unpublished publication
Ethics and community involvement in syntheses concerning American Indian, Alaska Native, or Native Hawaiian health: a systematic review
MO Gribble, DM Around Him - AJOB empirical bioethics, 2014
Publication Dates:
2014
Content Types:
Peer reviewed publication
Research Ethics and Indigenous Communities
Kelley, Allyson, Annie Belcourt-Dittloff, Cheryl Belcourt, and Gordon Belcourt. "Research ethics and indigenous communities." American journal of public health 103, no. 12 (2013): 2146-2152.
Publication Dates:
2013
Content Types:
Peer reviewed publication
Moving Forward: Breaking the Cycle of Mistrust Between American Indians and Researchers
Pacheco CM, Daley SM, Brown T, Filippi M, Greiner KA, Daley CM. Moving forward: breaking the cycle of mistrust between American Indians and researchers. American journal of public health. 2013 Dec;103(12):2152-9.
Publication Dates:
2013
Content Types:
Peer reviewed publication
Creating research capacity through a tribally based institutional review board. American journal of public health.
Morton DJ, Proudfit J, Calac D, Portillo M, Lofton-Fitzsimmons G, Molina T, Flores R, Lawson-Risso B, Majel-McCauley R. Creating research capacity through a tribally based institutional review board. American journal of public health. 2013 Dec;103(12):2160-4.
Publication Dates:
2013
Content Types:
Peer reviewed publication
Genomic research through an indigenous lens: understanding the expectations.
Garrison NA, Hudson M, Ballantyne LL, Garba I, Martinez A, Taualii M, Arbour L, Caron NR, Rainie SC. Genomic research through an indigenous lens: understanding the expectations. Annual review of genomics and human genetics. 2019 Aug 31;20(1):495-517.
Publication Dates:
2019
Content Types:
Peer reviewed publication
Good data practices for Indigenous Data Sovereignty and Governance
Lovett R, Lee V, Kukutai T, Cormack D, Rainie SC, Walker J. Good data practices for Indigenous data sovereignty and governance. Good data. 2019 Jan 23;2019:26-36.
United Nations Declaration on the Rights of Indigenous Peoples : resolution / adopted by the General Assembly
"UN General Assembly, United Nations Declaration on the Rights of Indigenous Peoples : resolution / adopted by the General Assembly, A/RES/61/295, 2 October 2007, https://www.refworld.org/legal/resolution/unga/2007/en/49353 [accessed 14 July 2025]
"
Extending research protections to tribal communities.
Saunkeah B, Beans JA, Peercy MT, Hiratsuka VY, Spicer P. Extending research protections to tribal communities. The American Journal of Bioethics. 2021 Oct 3;21(10):5-12
Publication Dates:
2021
Content Types:
Peer reviewed publication
Beyond the Belmont Principles: A Community-Based Approach to Developing an Indigenous Ethics Model and Curriculum for Training Health Researchers Working with American Indian and Alaska Native Communities
Parker M, Pearson C, Donald C, Fisher CB. Beyond the Belmont principles: A community‐based approach to developing an indigenous ethics model and curriculum for training health researchers working with American Indian and Alaska Native communities. American Journal of Community Psychology. 2019 Sep;64(1-2):9-20.
Publication Dates:
2019
Content Types:
Peer reviewed publication
Self-Determination in Health Research: An Alaska Native Example of Tribal Ownership and Research Regulation
Hiratsuka VY, Beans JA, Robinson RF, Shaw JL, Sylvester I, Dillard DA. Self-determination in health research: An Alaska Native example of tribal ownership and research regulation. International journal of environmental research and public health. 2017 Nov;14(11):1324.
Publication Dates:
2017
Content Types:
Peer reviewed publication
Waimānalo pono research hui: A community–academic partnership to promote Native Hawaiian wellness through culturally grounded and community‐driven research and programming.
Chung‐Do JJ, Ho‐Lastimosa I, Keaulana S, Ho Jr K, Hwang PW, Radovich T, Albinio L, Rogerson I, Keli ‘iholokai L, Deitschman K, Spencer MS. Waimānalo pono research hui: A community–academic partnership to promote Native Hawaiian wellness through culturally grounded and community‐driven research and programming. American journal of community psychology. 2019 Sep;64(1-2):107-17.
Publication Dates:
2019
Content Types:
Peer reviewed publication
Indigenous research ethics requirements: an examination of six tribal institutional review board applications and processes in the United States. Journal of empirical research on human research ethics.
Kuhn NS, Parker M, Lefthand-Begay C. Indigenous research ethics requirements: an examination of six tribal institutional review board applications and processes in the United States. Journal of empirical research on human research ethics. 2020 Oct;15(4):279-91.
Publication Dates:
2020
Content Types:
Peer reviewed publication
Walk softly and listen carefully: Building research relationships with tribal communities.
National Congress of American Indians Policy Research Center and MSU Center for Native Health Partnerships. "‘Walk softly and listen carefully’: Building research relationships with tribal communities." (2012).. (2012). Walk softly and listen carefully: Building research relationships with tribal communities.
Racial misclassification of American Indians and Alaska Natives by Indian Health Service contract health service delivery area.
Jim MA, Arias E, Seneca DS, Hoopes MJ, Jim CC, Johnson NJ, Wiggins CL. Racial misclassification of American Indians and Alaska Natives by Indian Health Service contract health service delivery area. American journal of public health. 2014 Jun;104(S3):S295-302.
Publication Dates:
2014
Content Types:
Peer reviewed publication
Consideration and disclosure of group risks in genomics and other data-centric research: Does the common rule need revision?
Chapman CR, Quinn GP, Natri HM, Berrios C, Dwyer P, Owens K, Heraty S, Caplan AL. Consideration and disclosure of group risks in genomics and other data-centric research: Does the common rule need revision?. The American Journal of Bioethics. 2025 Feb 1;25(2):47-60.
Publication Dates:
2025
Content Types:
Peer reviewed publication
Tribal IRBs: A framework for understanding research oversight in American Indian and Alaska Native communities.
Around Him, D., T. A. Aguilar, A. Frederick, H. Larsen, M. Seiber, and J. Angal. 2019. Tribal IRBs: A framework for understanding research oversight in American Indian and Alaska Native communities. American Indian and Alaska Native Mental Health Research (Online) 26 (2):71–95. doi: 10.5820/aian.2602.2019.71.
Publication Dates:
2019
Content Types:
Peer reviewed publication
CIOMS (Council for International Organizations of Medical Sciences) International ethical guidelines for health-related research involving humans.
CIOMS (Council for International Organizations of Medical Sciences). 2017. International ethical guidelines for health-related research involving humans.
A framework for enhancing ethical genomic research with Indigenous communities
Claw, K. G., M. Z. Anderson, R. L. Begay, K. S. Tsosie, K. Fox, and N. A. Garrison; Summer internship for INdigenous peoples in Genomics (SING) Consortium 2018. A framework for enhancing ethical genomic research with Indigenous communities. Nature Communications 9 (1):2957. doi: 10.1038/s41467-018-05188-3.
Publication Dates:
2018
Content Types:
Peer reviewed publication
DHHS 2018 Common Rule
DHHS (U.S. Department of Health and Human Services). 2018. (Revised January 19, 2017 and Amended January 22, 2018 and June 19, 2018). Code of Federal Regulations: Title 45, Public Welfare; Part 46, Protection of Human Subjects: 2018 Requirements (2018 Common Rule).
DHHS Tribal Consultation (2021)
DHHS (U.S. Department of Health and Human Services). 2021. Tribal consultation (website).
Indigenous peoples and the morality of the Human Genome Diversity Project
Dodson, M., and R. Williamson. 1999. Indigenous peoples and the morality of the Human Genome Diversity Project. Journal of Medical Ethics 25 (2):204–8. doi: 10.1136/jme.25.2.204.
Publication Dates:
1999
Content Types:
Peer reviewed publication
The dangers of data colonialism in precision public health
Ferryman, K. 2021. The dangers of data colonialism in precision public health. Global Policy 12 (S6):90–2. doi: 10.1111/1758-5899.12953.
Publication Dates:
2021
Content Types:
Peer reviewed publication
Genomic justice for Native Americans: Impact of the Havasupai case on genetic research
Garrison, N. A. 2013. Genomic justice for Native Americans: Impact of the Havasupai case on genetic research. Science, Technology & Human Values 38 (2):201–23. doi: 10.1177/0162243912470009.
Publication Dates:
2013
Content Types:
Peer reviewed publication
Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data.
Hudson, M., N. A. Garrison, R. Sterling, N. R. Caron, K. Fox, J. Yracheta, J. Anderson, P. Wilcox, L. Arbour, A. Brown, et al. 2020. Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data. Nature Reviews. Genetics 21 (6):377–84. doi: 10.1038/s41576-020-0228-x.
Publication Dates:
2020
Content Types:
Peer reviewed publication
Beyond Belmont: Ensuring respect for AI/AN communities through Tribal IRBs, laws, and policies.
Hull, S. C., and D. R. Wilson. 2017. Beyond Belmont: Ensuring respect for AI/AN communities through Tribal IRBs, laws, and policies. The American Journal of Bioethics 17 (7):60–2. doi: 10.1080/15265161.2017.1328531.
Publication Dates:
2017
Content Types:
Peer reviewed publication
Recognizing and respecting tribal IRBs
Ketchum, S., and R. Meyers. 2018. Recognizing and respecting tribal IRBs. Anthropology News 59 (4):e100–e103. doi: 10.1111/AN.908.
The Havasupai case and how to make consent forms better.
Lowenberg, K. 2010. The Havasupai case and how to make consent forms better. Stanford Law and Biosciences Blog, April 23. https://law-stanford-edu.proxy.lib.ohio-state.edu/2010/04/23/the-havasupai-case-and-how-to-make-consent-forms-better/
Genomic research through an indigenous lens: Understanding the expectations.
Garrison, N. A., M. Hudson, L. L. Ballantyne, I. Garba, A. Martinez, M. Taualii, L. Arbour, N. R. Caron, and S. C. Rainie. 2019. Genomic research through an indigenous lens: Understanding the expectations. Annual Review of Genomics and Human Genetics 20 (1):495–517. doi: 10.1146/annurev-genom-083118-015434.
Publication Dates:
2019
Content Types:
Peer reviewed publication
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