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. At the same time, the ELSIag aims to sensitize all players about the latest developments, regulations and frameworks in order to deal with research data in a unified and ethically legal manner. This page provides an overview of the ELSIag's activities and projects.
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 (SBP) and the ETH Domain Strategic Focus Area on Personalised Health and Related Technologies (PHRT).
Guidance for Reporting Actionable Genetic Findings to Research Participants
The document 'Reporting Actionable Genetic Findings to Research Participants' contains recommendations that suggest mechanisms to support an ethically responsible handling of research findings that have potential medical relevance for individual research participants involved in SPHN-funded studies. They suggest harmonized procedures to enhance the public accountability of decisions regarding how to report individual research findings to research participants. Adherence to the recommendations contained in this document will promote more accountable decisions in such an extremely delicate subject matter and will increase public trust in SPHN as well as in SPHN grantees.
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 (DTUA) and Material Transfer Agreement (MTA) templates to facilitate data and material exchange in the context of academic research projects.
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. Further, the DTUA was approved by swissethics in December 2019.
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.