PRECISE-IHCC Conference – From Cohorts to Clinics: The New Landscape of Global Healthcare (21-23 Aug 2024) REGISTER NOW →


Policies and Systems

Developing a policy agenda to facilitate and optimize the impact of assembling cohorts; addressing challenges and identifying common needs.


Core Initiatives

  • Data sharing
  • Consent
  • Approval of new studies
  • Allowability of industry collaboration
  • Global Alliance for Genomics and Health (GA4GH)
  • General Data Protection Regulation (GDPR)
  • Findability, Accessibility, Interoperability, and Reusability (FAIR) principles
  • Other cohorts and consortia
  • Identify essential data needs for early goals
  • Identify ideal sharing model for basic needs
  • 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


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 and we will connect you to the team.