WORKING GROUP
Policies and Systems
Developing a policy agenda to facilitate and optimize the impact of assembling cohorts; addressing challenges and identifying common needs.
WHAT WE DO
Core Initiatives
- Understand the spectrum of legal frameworks governing IHCC cohorts, including:
- Data sharing
- Consent
- Approval of new studies
- Allowability of industry collaboration
- Understand and reuse existing principles from:
- Global Alliance for Genomics and Health (GA4GH)
- General Data Protection Regulation (GDPR)
- Findability, Accessibility, Interoperability, and Reusability (FAIR) principles
- Other cohorts and consortia
- Understand the needs of proposed scientific projects regarding policy or data sharing
- Identify essential data needs for early goals
- Identify ideal sharing model for basic needs
- Develop governance and policy structure to guide cohort activities
- Identify core and common principles for value
- Identify barriers and solutions for how cohorts come together to collaborate
- Create foundational documents that might be needed to bring consistency or fill gaps for cohorts
- Identifying best practices on how to share ‘omics data
Leadership
Latifa El Hadri, Ph.D.
Working Group Project Manager
Nicki Tiffin, Ph.D., M.P.H.
Working Group Lead
Laura Lyman Rodriguez, Ph.D.
Working Group Lead
Join Us!
The Policies and Systems Working Group members meet on the third Monday of each month at 9:00 a.m. EST on Zoom. Meetings are open to all IHCC members every other month.
Interested in Joining the Policies and Systems Working Group?
Email us at ihccinfo@ihccglobal.org and we will connect you to the team.
