Researchers in all domains must consider ethical and legal issues in planning their research, but it is even more important in personalised health, where the risks of data exposure are especially severe.

SPHN and BioMedIT provide support on ethical, legal and social implications (ELSI), especially related to agreements for the transfer, processing and use of data. This support is intended to directly assist SPHN projects and provide additional support to other related initiatives. We are also working on longer term projects to build community maturity around ELSI issues. Full information can be found on the SPHN website, or in our introductory video on legal agreements.

SPHN and BioMedIT provide targeted ELSI support for project, proposals, depending on the type.

For SPHN funded projects:

• Documentation, training material and templates to support the establishment of legal frameworks and agreements. 
• Support for the drafting of documents for legal frameworks and legal agreements
• Review and consultancy of the drafted legal documents
• Advice on the process of finalising agreements, including review, approval and gathering signatures

For Personalized Health and Related Technologies (PHRT) projects:

• Documentation, training material and templates to support the establishment of legal frameworks and agreements. 
• Consultancy meeting for the drafting of a legal framework (one support meeting per project)
• Review and consultancy of drafted legal documents (on a best effort basis)

For other projects outside the scope of SPHN:

• Documentation, training material and templates to support the establishment of legal frameworks and agreements. 
• Consultancy meeting for the drafting of a legal framework (one support meeting per project) based on the SPHN legal framework templates

Contact the ELSI helpdesk

In addition, the ELSI team works on a number of longer-term activities to address ELSI-related issues in multi-center research projects sharing health data. These include:

• Creating de-identification recommendations in compliance with Swiss legal requirements
• Development of harmonized governance strategy for using and reusing health-related data in multi-centre projects
• Investigating frameworks for using health-related data in non-research projects (e.g. diagnostic use in clinical settings) 
• Enhancing SPHN legal agreement templates including simplifying templates, adding support for sample sharing, and sharing registry data
• Alignment on activities relates to data sharing obstacles in practical research