International 100K Cohort Consortium (IHCC)

International 100K Cohort Consortium (IHCC)

Linking cohorts, understanding biology, improving health

International 100K Cohort
Consortium (IHCC)

Team C: Policy and Bio-Data Sharing

Charge / Overview

Develop a policy agenda to facilitate and optimize the impact of assembling cohorts; address challenges and identify common needs.

Core Initiatives

  1. Understand the spectrum of legal frameworks governing IHCC cohorts
    • Data sharing
    • Consent
    • Approval of new studies
    • If industry collaboration is allowed
  2. Understand and reuse existing principles
    • Global Alliance for Genomics and Health (GA4GH)
    • General Data Protection Regulation (GDPR)
    • Findability, Accessibility, Interoperability, and Reusability (FAIR) principles
    • Other cohorts and consortia
  3. 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
  4. 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 practice on how to share ‘omics data

Team Leads

Members

Arash Etemadi
John Gallacher
Farin Kamangar
Reza Malekzadeh
Usha Menon
Paul Pinsky
Camilla Stoltenberg
Robyn Ward
Walter Willett
Ma’n Zawati