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Published on: May 22, 2018
Building Global Genomics Initiatives and Enabling Data Sharing: Insights from Multiple Case Studies
Federica Fusi1, Daniele Manzella1, Selim Louafi2
11 Center for Science, Technology and Environmental Policy Studies, School of Public Affairs, Arizona State University , Phoenix, Arizona.
Global genomics initiatives face complex challenges in data sharing and governance. Effective models require adapting structures to diverse social, technical, and policy environments, emphasizing scientific community engagement.
Area of Science:
- Genomics
- Bioinformatics
- Scientific Governance
Background:
- Global genomics initiatives grapple with evolving challenges in data management, exchange, and cross-border collaboration.
- Existing research often simplifies governance models into dichotomies, failing to capture nuanced realities.
Purpose of the Study:
- To analyze the dynamics and adaptive strategies of global genomics initiatives in data governance.
- To expand understanding beyond simplistic open vs. property data regime frameworks.
- To identify common themes and fundamental differences in how initiatives manage resources, goals, and data sharing.
Main Methods:
- Employed a multiple case study approach to assess and compare organizational responses.
- Conducted a comparative qualitative analysis of diverse genomics initiatives.
- Examined how initiatives adapt governance, management, and design solutions to varied environments.
Main Results:
- Genomics initiatives exhibit fundamental differences in goal setting, resource definition, governance design, and data sharing mechanisms.
- Governance structures and management processes are continuously adapted to social, technical, and policy contexts.
- Engagement with large scientific communities is crucial for developing shared rules for data exchange and use.
Conclusions:
- Genomics initiatives necessitate adaptive governance structures shaped by their unique operational environments.
- Community engagement is vital for co-designing effective data sharing and usage guidelines.
- The study offers a benchmark for understanding scientific governance and innovation in omics research.
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