Ethics Guidance on Sharing and Publishing Sensitive Data from Local to National Scales
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IDCC 2026 conference
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The legal, secure and ethical management of sensitive data is crucial for transparent and reproducible research. The use of comprehensive legal agreements has become standard practice in national and international collaborations in data-driven health research and beyond.
In Switzerland, however, the situation is further complicated by scarce national coordination of governance practices and a fragmented understanding of cantonal and federal ethical and legal requirements. To address these challenges and simplify negotiations in health-driven research projects at the national level, the Swiss Personalized Health Network (SPHN), enabling the responsible use of sensitive data and fostering national collaborations that advance science and benefit society, has developed a unified contractual framework.
At the University of Bern (UniBE), the Data Steward (DS) Team is actively participating together with 41 Higher Education Institutions and Research Institutes in the Swiss Research Data Support Network (SRDSN). The DS-Team is part of SRDSN Steering Committee, Operational Committee as well as co-lead the Sensitive Personal Data Node (PSDN) for an exchange between research data professionals across Switzerland and collaborates with the SPHN for fostering efforts at the national level.
The UniBE is in the pilot phase of developing a secure data platform in collaboration with a national IT partner. This platform opens new perspectives for researchers, who are working on and with sensitive data across all disciplines at the national and international levels. We are developing governance checklists and ethics recommendations to ensure that sensitive research data are handled ethically, responsibly, transparently in line with FAIR and CARE data principles throughout the research data lifecycle and in a manner that promotes trust, reproducibility, and innovation.
Acknowledgements: Swissuniversities
In Switzerland, however, the situation is further complicated by scarce national coordination of governance practices and a fragmented understanding of cantonal and federal ethical and legal requirements. To address these challenges and simplify negotiations in health-driven research projects at the national level, the Swiss Personalized Health Network (SPHN), enabling the responsible use of sensitive data and fostering national collaborations that advance science and benefit society, has developed a unified contractual framework.
At the University of Bern (UniBE), the Data Steward (DS) Team is actively participating together with 41 Higher Education Institutions and Research Institutes in the Swiss Research Data Support Network (SRDSN). The DS-Team is part of SRDSN Steering Committee, Operational Committee as well as co-lead the Sensitive Personal Data Node (PSDN) for an exchange between research data professionals across Switzerland and collaborates with the SPHN for fostering efforts at the national level.
The UniBE is in the pilot phase of developing a secure data platform in collaboration with a national IT partner. This platform opens new perspectives for researchers, who are working on and with sensitive data across all disciplines at the national and international levels. We are developing governance checklists and ethics recommendations to ensure that sensitive research data are handled ethically, responsibly, transparently in line with FAIR and CARE data principles throughout the research data lifecycle and in a manner that promotes trust, reproducibility, and innovation.
Acknowledgements: Swissuniversities
Date of Publication
2026
Publication Type
Conference Item
Subject(s)
Keyword(s)
Data ethics
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recommendations
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sensitive data
Language(s)
en
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Title of Event
Access(Rights)
open.access