Trusted framework for genomic data in human research: New SPHN Guidance

The SPHN ELSI advisory group has published a comprehensive guidance paper on the further use of human genomic data for research purposes.

Genomic medicine holds immense potential to advance healthcare, but its success depends on societal trust in research institutions and data infrastructures. As a collaborative long-term endeavour, genomic research requires sharing data across institutional and national boundaries  over extended periods. Building and maintaining trust in this endeavor demands respectful consent models, robust governance structures, and ongoing engagement with individuals who entrust their data for research.

The newly published guidance addresses the unique challenges posed by human genomic data, particularly regarding autonomous decision-making and the responsible communication of genetic findings, privacy protection and data access conditions for genomic data. It also emphasizes the importance of active participation of patients and citizens in genomic research.

The document builds on established guidelines, and adapts them to the specific legal and social context of Switzerland. The guidance promotes a harmonized national approach to genomic data governance, enabling both national and international collaboration while strengthening public trust in genomic research.

The guidance is designed to support a wide range of stakeholders, including providers, recipients, processors of genomic data, as well as regulatory bodies such as ethics and governance boards. By adopting these recommendations, stakeholders can help establish a trustworthy framework for genomic research.