2019- TSGAC Letter: Comments on Tribal Engagement with the NIH All of Us Research Program

TSGAC outlined a number of concerns, including:

  • Lack of respect for Tribal data sovereignty. Data sovereignty involves a Tribe’s right to govern the collection, ownership, and application of their own data. Because the parameters of All of Us are broad and ambiguous, Tribes feel unsafe and unwilling to partake in the research.
  • Lack of cultural sensitivity training and failure to adhere to data ethics. Under the All of Us program rules, any researcher would have access to data that is shared by volunteers, on the condition that the researcher completes an ethics training, signs a data use agreement, and posts on the NIH website the parameters of their research project.
  • Lack of clarity in the consultation process. Tribes are concerned that NIH is conflating Tribal consultation sessions with listening sessions. Additionally, Tribes have reported that the agency has attempted to hold consultation sessions for three different initiatives at once: the All of Us program, the Draft Data Sharing and Management Policy, and the Intellectual Property Policy.

Agenda

Thursday, August 4

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Agenda

Wednesday, August 3

Download Day 3 Agenda Here

Agenda

Tuesday, August 2

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7:30 am
Registration (Location: Sequoia)

9:00 am
Posting of Colors (Location: Grand Peninsula Ballroom)

9:05 am
Welcome & Opening Prayer

9:10 am
Time of Reflection

9:25 am
Welcome & Opening Message from SGCETC Board of Directors 

9:30 am
Welcome from Tribal Nations within California and Discussion of Hot  Topics

10:15 am
Discussion with Assistant Secretary – Indian Affairs Bryan Newland

10:30 am
Break

10:45 am
Establishing the Bay Area American Indian Cultural District

11:00 am
COVID Update and Indian Health Service Initiatives to Improve Health and Wellbeing

11:30 am
International Decade (2022 – 2032) of Indigenous Language Preservation

11:45 am
Lunch Break

1:00 pm – 2:00 pm
Breakout Sessions

 2:00 pm – 2:15 pm
Networking Break

2:15 pm – 3:30 pm
Breakout Sessions

3:30 pm- 3:45 pm
Break

3:45 pm
Threats to Tribal Sovereignty: Protecting the Indian Child Welfare Act

(Location: Grand Peninsula Ballroom)

4:05 pm
Self-Governance Updates from DOI, IHS, and DOT

4:45 pm
Tiwahe Initiative – Federal Updates

 

Additional Meetings and Activities

11:30 am – 5:00 pm
DOI SGDB Training Room (Sand Pebble D)

11:30 am – 5:00 pm
Individual Meetings with OSG Staff- Open (Board Rooms 3 & 4)

6:00 pm – 7:00 pm
Tribal Caucus for the Food Distribution Program for Indian Reservations Consultation Meeting (Cypress A)