2 October 2023 (updated on 4 December)
Effy Vayena has been a dedicated contributor to the SPHN initiative from its inception. As chair of the ELSI Advisory Group (ELSIag) E. Vayena has made important contributions to laying the ground work of today’s network. With the Ethical Framework for Responsible Data processing, the ELSIag established one of the foundational frameworks of the network, offering guidance to the community and SPHN partners on the ethical and responsible sharing of sensitive health data.
E. Vayena’s research and contributions on data privacy and ethics in the context of health data sharing have been pivotal in shaping the initiative’s approach to safeguarding sensitive information while advancing research. With the development of further ethical guidelines regarding the reporting of actionable genetic results or ethical health data sharing in public private partnerships, the ELSIag has not only contributed to raising awareness on these topics, but also provided researchers with an important practical set of guidance.
We express our sincere appreciation for Effy's foundational contributions and thank her for the continuous support of the initiative.
At the same time, we warmly welcome Susanne Driessen, who took over the chairmanship of the ELSIag in September 2023. She is a senior physician at the Cantonal Hospital of St. Gallen and has been an active member of the group since the start of the initiative. As President of the Ethics Committee of Eastern Switzerland and of swissethics, the umbrella organisation of the cantonal ethics committees, Susanne Driessen brings a wealth of experience and expertise to the table - particularly for advancing ethical issues with genomic data.
The broad expertise of the ELSIag will be further strengthened by two new members: Thomas Gächter (Faculty of Law, University of Zurich) and Benno Röthlisberger (Genetica AG and member of the National Ethics Committee NCE). In addition, Manya Hendriks will ensure the interface with the SAMS Ethics Department and Michaela Egli will support the committee as the new ELSI project manager of SPHN. The ELSIag is therefore ideally positioned to accompany SPHN into the next phase.