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What is Data Sovereignty?

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Data sovreignty is the ability, access, security, decision making, to be firmly in the hands, geographical area, of the people, and communty the data is for, or about Control and access.

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right/ability to oversee, direct, and have control over data, including what counts as data and how that is construed, and all ways data is used

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Local Contexts: Museum Database Management, Cultural Stewardship

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What are your key takeaways from Day 1? What should KU leadership consider moving forward as we work to build capacity for advancing data sovereignty?

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Conversion of historical data along with static data to a protected system. The system will allow new entries and ability to pull records.

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Session 1- Data Sovereignty: An Interdisciplinary Panel (Native and non-Native Ally perspectives)

Dr. Melinda Adams

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Session 1- Data Sovereignty: An Interdisciplinary Panel (Native and non-Native Ally perspectives)

Jennifer Raff

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Data sovereignty presentation slides only

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Data Sovereignty: An Interdisciplinary Panel (Native and non-Native Ally perspectives)

Gwen Sibley

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Data Sovereignty & Intellectual Property

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Data sovereignty relates to ‘who owns information’

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What are the varied ways that different disciplines interpret "data sovereignty"?

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Day 3 Panel - Tribal Museums and Cultural Centers

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Session 2 - Indigenous Data Sovereignty: An Overview of Promising Practices and Emerging Innovations

If we are to build capacities to advance Data Sovereignty on the Southern Plains, what are some key takeaway to consider from this presentation?

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Day 3: Museums, Storage, Standards of Care at KU

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If we are to build capacities to advance Data Sovereignty on the Southern Plains, what are some key takeaway to consider from this presentation?

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What are your key takeaways from learning about Tribal IRB? What actions should the University of Kansas pursue moving forward?

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Post by Cindy Hohl, President, American Library Association 2024-2025

Session 7 - Examples of Tribal IRB Exemplars and Developments

1. The role of Tribal College Universities (TCU) & Tribal Institutional Review Boards (IRB’s)

2.  TCU List (35 Institutions, 90 Campuses)

a.  Slide: Geography map (Disclaimer: Confidential and Proprietary. Do Not Share.)

b.  Will the slides be shared with attendees? Additional slides referenced below.

3.  Action Item: Tribes to develop a data sharing agreement before working with third-party entities

a. Source: NPAIHB template example

4.  Institution and tribal IRB collaboration process

a. Source: The University of New Mexico

b. Source: Haskell Indian Nations University

5. Transformational Indigenous Learning System (TILES)

a. Slide 12: Learning and Evaluation Core Values

6. IRB Overviews

a. Source: University of Arizona How to Build & Sustain a Tribal IRB

b. Source: IHS Navigating the Maze Tribal IRBs

7. Gaps (6) Challenges (6) Tensions (9) in Mainstream Research/IRB

a. Slide 28: Snapshot Mainstream IRBs

8. Gaps (10) Challenges (9) Tensions (11) in Tribal/TCU IRBs

a. Slide 29: Snapshot Tribal/TCU IRBs

9. IRB Board Makeup

a. Slide 30: Graph of Federal/State Laws and Sovereign Nations

b. Source: NIH Toolkit

10. Main IRB Application Process Review

a. Slide: Chart of comparative analysis between 3 institutions

11. Tribal Research Code – rules and regulations for research

a.   Source: Denver Indian Health and Family Services Inc. Research Engagement Guidelines

b.  Source: Ho-Chunk Tribal Research Code

c. Source: Tribal Resource Protocols

d. Source: NIH Tribal Health Research Office

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Post by Cindy Hohl, President, American Library Association 2024-2025

12.  Research Policies

a.  Source: University of Utah Guiding Principles in Native American Research

b. Source: UNM Guidance on Research with American Indian Communities

c. Source: University of Wisconsin Tribal Consultation Policy

d. Source: NIH Guidelines for AI/AN Research in the Health Sciences

e. Source: Washington State University Policy on Tribal Engagement, Consultation, and Consent

f. Source: University of Arizona Tribal Consultation Policy

g. Source: NIH IRBs and HIPAA Privacy Rule

h.  Source: Multiple FERPA and IRB Guidance

13.  Funding Agency Policy

a.  Source: U.S. National Science Foundation Tribal Consultation Requirements for Approval

b.   Source: U.S. National Science Foundation Supporting Tribes in STEM

c.  Source: NIH Grants Training and Resources for Human Subjects

d. Source: Tribal Institutional Review Board Establishment and Enhancement (R24 - Clinical Trial Not Allowed). Webinar

14.  Lessons learned (15)

a.   Slide 36

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Post by Cindy Hohl, President, American Library Association 2024-2025

15.  Resources: Slide 37

a.  Source: AIHEC Native American Research Center

b.  Source: AICF Tribal College IRB Professional Development Sessions

c. Source: ETHICS Research Ethics Training for Health in Indigenous Communities

d. Source: UNM HSC CBPR Institute

e.  Source: NAU How to Conduct Research

f.  Source: UIHI Decolonize Data Toolkit

g. Source: The University of Arizona Native Nations Institute

h.  Source: IHS IRB Board List and Best Practices in Working with Tribal IRBs

16.  HARM

a.  Source: TCJ Blood, Lies, and Indian Rights

b.  Source: USA Today US EO 14049

c.  Genomics and health data

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Tribal IRBs are important but as universities we owe them that partnership to build this infrastructure together. Some tribes are further than others but it has to be evolving as tribes navigate their needs for data sovereignty research and IRB established in their communities. what is sustainable by the nations. Protocols of approaching elders and community members is vital to this process.

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What are your key takeaways from learning about IndigeData and Bioinformatics? What actions should we pursue at the University of Kansas to build capacities for Data Sovereignty moving forward?

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Post by Cindy Hohl, President, American Library Association 2024-2025

Session 8 - Data Base Development: Data Sovereignty, IndigeData and Bioinformatics

1. Note: With 570+ Federally Recognized Tribes, less than 31 have their own IRBs

2. Source: Arizona State University The Tsosie Lab for Indigenous Genomic Data Equity and Justice

3. Source: Science News Geneticist Krystal Tsosie advocates for Indigenous data sovereignty

4. Source: Field Museum Presentation 2023

5. Source: Ford School of Public Policy 2023

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Through learning about the fundamentals of IRB and human subjects research policy/protocols, what are your key takeaways related to building capacities for data sovereignty and tribal IRB development moving forward? What actions should the University of Kansas take in this area?

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Post by Cindy Hohl, President, American Library Association 2024-2025

Session 9 - IRB Leadership in Kansas: IRB Overview, Basics, and Q and A for Tribal Leaders Unfamiliar with IRB.

1.  Kansas State University- Office of Research Integrity, Compliance, and Security

a. Develop an IRB Plan:

i.  Source: KSU IRB Training and IHS IRB Training and KU IRB Training

ii.  Source: HHS IRB Federal laws and Common Rule

iii.  Source: Mayo Clinic IRB Policy Manual

iv.  Source: University of Utah Standard Operating Procedures IRB

v.  Source: IRB Software and IRBManager

2.  Terminology Feedback: Why use “Human Subjects” vs Participants?

3  Citi Program Training: Research with Native American Communities and Trusted Standard in Research Training

4.  Source: HHS Individual Investigator Agreement, to engage in research with the research institution

5.  Source: Texas A&M IRB Reliance Agreement Template, and HHS Authorization Form, they need a federal designation

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Post by Cindy Hohl, President, American Library Association 2024-2025

6.  Institutional Policy: Only Faculty (Not Staff) can submit research

7.  Note: Federal funding might require an IIA/reliance agreement

8.  IRB Submission Timeline: review within 5-7 business days

9.  Exempt studies, identify risk, expedited review- identify data points, medical assessments, etc.

10.  Non-natives doing extractive research on native peoples

11.   Data security measures in place to not place individuals at risk of identifying

12.  Video/audio= identifiable data (use transcripts instead)

13.  PII in IRB- state data (controls access, doesn’t recognize tribal sovereignty)

14.  IRB Submission Process

a.  Source: University of Kansas

15.  Oral history studies/ancestor data- outside of IRB, only living subjects are protected

16.  Research about us, without us.

a.  Goal: Bring this IRB back to sovereign nations for evaluation/review/approval.

b. Source: HHS Online Research Ethics Course

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Post by Cindy Hohl, President, American Library Association 2024-2025

17.  Tribal IRB: Respectful Data about MMIWP and Boarding Schools

18.  Source: United Nations Declaration On The Rights of Indigenous Peoples UNDRIP

19.  Source: KU Center for Public Partnerships and Research

20.  Relationship building pedagogy

a. Tribal standards protocols

b. Paying elders for their expertise

c.  Grant to cover food offerings

d.       Following welcome protocols

e.       Closing Out the IRB Process- In A Good Way

21.  KU Research Units (Panel Q&A)

22.  Develop: “Indian 101” Toolkit with QR code (working with tribes)

23.  Issue: Library Capacity.

a. (State library funding- didn’t cover tribes because of the library definition and libraries work with a lot of data.

24.  American Library Association President worked with IMLS Director to update the tribal library definition to public library so that state libraries will share federal funds with tribal libraries.

a. Kansas tribes do not have libraries, this is an area of opportunity.

b. Request: KU to Develop a Tribal Library Certificate Program in collaboration with Haskell Indian Nations University

25.  Nominate Haskell Indian Nations University for Library Of The Year (Capacity issues/funding support)

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Post by Cindy Hohl, President, American Library Association 2024-2025

26.  KU/HINU Library Collaboration:

a.  Include ATALM

b.  Include AILA

c.  Include ALA RNTLOAK

d.  Include IFLA Indigenous Matters Section

26.  Federal Indian Law- natural resource management, buffalo program, wildlife= pathways to return to communities

27.  Building partnerships with tribes, MOU process

a.  Source: DOI MOU Protection of Tribal Treaty Rights

b.  Source: USDA Partnerships with Tribal Nations

c.  Source: Southern Ute Tribal Information Services

28.  Never Forget: You Are On Native Land and Tribal Sovereignty is NOT Negotiable. Have a good day, relatives!

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Based on what Native Nations are saying, what are our key capacity building needs for improving data sovereignty related to tribal IRB?

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From what we heard from research leadership on this campus, how should we be building capacity for data sovereignty at institutions such as KU?

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Leave your final debrief thoughts here please. We will take these and use them to help chart new strategic directions at KU for building capacities for advancing data sovereignty moving forward.

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Collaborative Strategic Planning and Next Steps - What resonates for you?

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Commercial data regulation based on tribal data sovereignty for external companies needs a seperate swim lane. Data centers can be very small and can generate significant tax revenue for nations. Not commercializing our data. Giving companies regulation clarity for the work they wish to do. Colonial confusion and regulatory ambiguity is a ripe opportunity to improve our GDP.

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With respect to tribal data sovereignty and this session, defining the salient attributes of "not soveirgn" is possible and can be achieved. A litmus test of "non sovereignty" would be valuable.

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What are the varied ways that different disciplines interpret "data sovereignty"?

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Interdisciplinary Graduate Student Panel

Kelly Beym

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Interdisciplinary Graduate Student Panel

Chamisa Edmo

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If we are to build capacities to advance data sovereignty on the Southern Plains, what are some key takeaways from tribal and Haskell leadership in Kansas?

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If we are going to build capacities to advance Data Sovereignty on the Southern Plains, what are some key takeaways from our partner Nations in Oklahoma (who are historically connected to Kansas)?

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Day 3: Tribal Museum Development and Cultural Stewardship Goals

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What next steps are you considering?

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Day 2 Recap....

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Resource Share: Data Library Guides! Librarians curate information in handy guides for everyone to use.

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Library Guides: Native American Studies: Indigenous Data Sovereignty

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Library Guides: Native American Studies: Indigenous Data Sovereignty

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To what extent should NAGPRA be expanded to include data, from boarding schools, MMIWP, etc.

How can NAGPRA expand to include other institutions/repositories of libraries, archives, hospitals, and churches?