ELSI activities

The Ethical, Legal and Social Implications advisory group (ELSIag) is an advisory body to the entire SPHN. As such it is tasked to address key ethical, legal and societal challenges that are relevant to the SPHN’s activities.

 

This page provides an overview of the ELSIag's activities and projects.

Completed activities

Ethical Framework for Responsible Data Processing in Personalized Health Research

 

The Framework provides ethical guidance to the partners of the Network as to the collection, storage, analysis and sharing of personal data for research purposes. Health-related personal data are often derived from human biological material. Both data and human biological material are addressed in the second version of the Framework, which is endorsed by the Swiss Biobanking Platform and the ETH Domain Strategic Focus Area on Personalised Health and Related Technologies (PHRT).


 

Further information:

Ethical Framework for Responsible Data Processing (version 1)

Ethical Framework for Responsible Data Processing (version 2)

Report on the methodology

Publication

 

Glossary

 

In order to ensure that SPHN stakeholders, partners and participating institutions share a common understanding on the most frequently used legal and technical terms related to SPHN, the ELSIag has developed a Glossary

Current activities

  • Guidance for Return of Actionable Individual Research Results

 

  • Common Data Transfer and Use Agreement Template

 

In order to harmonize the way in which data is transferred from the hospitals to the researchers and/or used by the latter, the ELSIag had the mandate to provide SPHN stakeholders with a common template for a Data Transfer and Use Agreement (DTUA). The template will be available from mid 2019. 

About the ELSI Advisory Group

The ELSI advisory group (ELSIag) is composed of experts from various relevant fields such as bioethics, life sciences law, social sciences. It also includes representatives of the Swiss Academy of Medical Sciences (SAMS)swissethics, and patient advocacy groups.

 

Further information

Workshop Governance of trust in Precision Medicine

In 2017, the ELSI advisory group has co-organized a workshop on the topic of 'Governance of trust in Precision Medicine' together with the International Risk Goverance Center (IRGC) at EPFL. The workshop report as well as related publications can be found here