Building Global Genomics Initiatives and Enabling Data Sharing: Insights from Multiple Case Studies.

Abstract

This genomics global governance research study presents the dynamics and the evolving nature of salient challenges that global genomics initiatives encounter in designing new models for data management, exchange, and collaboration across disciplines, sectors, and countries. Using a multiple case study approach, we assessed and compared organizational responses across diverse genomics initiatives. The richness of a comparative qualitative analysis clearly shows the complexity addressed by genomics initiatives and, importantly, expands current studies by moving beyond an open versus property regime dichotomy. Although we identify some common themes, fundamental differences emerge in the way genomics initiatives set goals, manage heterogeneity, define resources, devise governance, and enable data sharing. Such differences demonstrate the ongoing processes of adapting governance structures, management processes, and organizational design solutions that are implemented in response to different social, technical, and policy environments. We find that genomics initiatives largely benefit from and are shaped by the engagement with large communities of scientists to rethink and design shared rules and guidelines for data exchange and use. Our study provides direct guidance to future global genomics initiatives, but it also offers a benchmark for research in the omics field broadly, both in terms of design and methodological approaches to understand the emerging forms of scientific governance and innovation ecosystems.