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

 

 

Common Data Transfer and Use Agreement (DTUA) Template

SPHN and Swiss Biobanking Platform (SBP) have worked in close collaboration to deliver Data Transfer and Use Agreement and Material Transfer Agreement templates to facilitate data and material exchange in the context of academic research projects.

 

In order to be able to exchange data and samples for research projects between institutions, a Data Transfer and Use Agreement (DTUA) and/or Material Transfer Agreement (MTA) are required. As part of a national harmonization effort, SPHN and SBP have, together with Swiss universities (Basel, Bern, Geneva, Lausanne, Zurich), ETH-Domain institutions (EPFL, ETHZ), and the five University Hospitals, developed common templates for both documents.

 

SPHN and SBP encourages their partners as well as anyone working with data or biological material in Switzerland to adopt these templates. Indeed, the same DTUA and MTA model will be used in the future by these institutions, which is a considerable added value.

 

Data Transfer and Use Agreement template (29.03.2019)

Factsheet on the DTUA (03.04.2019)

Material Tranfer Agreement template developed by SBP

Current activities

  • Guidance for Return of Actionable Individual Research Results

 

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