Table 1.

Deliberation design.

Site-Specific Content
CNDRPH – Participation in Genomic Research
Do the potential benefits outweigh the potential risks of tribal participation in genetic studies, e.g., All of Us? Do the potential benefits outweigh the potential risks of tribal participation in biobanks?
SCF – Return of Results
What are the potential benefits and harms of genetic testing and return of results? What are the potential benefits and harms of direct-to-consumer testing?
MBIRI – Data Governance
What types of data should be protected? What form of data governance do we trust? What does good tribal data governance look like to us?
Shared Structural Features
Length of deliberation: 1.5 days with shared meals Number of deliberants: 15 to 21 deliberants Structure of facilitation: one community-placed facilitator, one deliberation facilitator Ground rules for discussion that incorporate culturally familiar practices and language; deliberations opened and closed with prayer led by a traditional leader No advance educational materials; experts present balanced plain language information during events Agenda: welcome, introductions, ground rules; expert presentation and Q&A; whole group discussion followed by small group discussions with case scenarios; flip charts to track deliberation themes and deliberant “check-ins” to ensure accuracy of themes; polling and voting exercises to assess deliberant views and priorities; Pre- and post-deliberation survey; All participants paid $25/hr stipend for participating in 1.5 day event Deliberation report for deliberants and tribal leadership, with deliberant review and input prior to finalizing Consistent deliberation team members to carry out range of activities