Guiding Principles for Human Data Sharing and Use:
Balancing Public and Scientific Values
15-16 July 2025
Guiding Principles for Human Data Sharing and Use:
Day 1
8:00-9:00am Breakfast available
9:00-9:30am Welcome, Meeting Overview, Context, and Introductions
— Debra Mathews
— Megan Singleton
9:30-10:30m Landscaping results and discussion
— Emmie Hood
— Juli Bollinger
10:30-10:45am Break
10:45-12:45pm Case Examples: Actors, Process, Content
— Debra Mathws (Moderator)
— Martha Jones
— Rachele Hendricks-Sturrup
— Stuart Ray
12:45-1:45pm Lunch
1:45-3:00pm The Role of Community/Public Representatives
— Megan Singleton (Moderator)
— Roger Clark
— Lisa Schlager
— Krystal Tsosie
3:00-3:15pm Break
3:15-4:15pm Public and Scientific Values in Data Sharing
— Debra Mathews
— Emmie Hood
4:15-5:00pm Synthesis and Gaps
— Debra Mathews
— Juli Bollinger
5:00-5:30pm Wrap Up and Next Steps
— Debra Mathews
5:30-6:00pm Reception
6:00pm Dinner
Day 2
8:00-9:00am Breakfast available
9:00-9:30am Agenda preview, charge, and overnight reflections
9:30-11:00am Recommendations: Breakout Groups
> Each group to fill out 1-3 slides that share:
– Key background
– Consensus points
– Open questions for the plenary group
> Share output-in-development (if appropriate)
11:00-11:15am Break
11:15-12:30pm Recommendations: Plenary
12:30-1:30pm Lunch
1:30-3:30pm Recommendations: Plenary (con’t)
3:30-4:00pm Next Steps and Closing Comments
— Debra Mathews
— Megan Singleton
— Participants
4:00pm Adjourn