How medical data can be safely shared between research units is a highly topical issue. The issue is central to both EUCANCan’s Work Package 6 and the EUCAN ELSI Collaboratory, a cross-project collaboration consisting of seven Horizon 2020-funded research projects. In this article, Prof. Pilar Nicolás talks about her work in EUCANCan and how the EUCAN ELSI Collaboratory provides a platform for knowledge exchange between ethical legal experts.
Prof. Pilar Nicolás is a Permanent Senior Research Fellow at the Chair in Law and the Human Genome (Public Law Department) at the University of the Basque Country in Leioa, Spain. In EUCANCan, she is a part of Work Package 6, which is co-led by Prof. Bartha Maria Knoppers at McGill University in Montreal, Canada, and Dr. iur. Fruzsina Molnár-Gábor at the Heidelberg Academy of Sciences and Humanities in Heidelberg, Germany.
Developing a practical guide for different scenarios of genome data sharing
Within EUCANCan’s Work Package 6, Prof Nicolás and her colleagues at the University of the Basque Country lead the work of creating a practical guide for how EUCANCan and other research projects can implement a data sharing governance framework that provides ethical and legal guarantees. The document will include guidance for several different scenarios.
By presenting a number of “if this, then that”-sample workflows and frameworks, the team aims to showcase how different scenarios require different approaches to ensure safe data sharing. The published work will be shared both within and outside of EUCANCan.
Knowledge sharing within the EUCAN cluster: The EUCAN ELSI Collaboratory
EUCANCan is one of seven projects in the EUCAN ELSI Collaboratory, together with euCanSHare, CINECA, iReceptor Plus, EUCAN-Connect, ReCoD-ID, and EuCanImage. The Collaboratory offers a platform for people who work with ethico-legal questions in either of the projects to exchange knowledge and discuss topics of common interest.
One topic that the EUCAN ELSI Collaboratory has discussed is how the members can share their expertise most effectively with other members of their respective research consortia. The group has concluded that the Data Management Plan (DMP) is one concrete example of an effort that can help streamline communication within and between the consortia. While the members of the EUCAN ELSI Collaboratory are not directly responsible for writing the plan, they can contribute with insights – such as suggestions for how the section on data governance can be structured – that help secure the success of the project.
Prof. Pilar Nicolás highlights the chance to discuss ongoing projects with other ethico-legal experts as one of the greatest winnings of being a part of the EUCAN ELSI Collaboratory:
“The EUCAN ELSI Collaboratory helps to create a community of legal and ethical experts that have both practical and academic experience with health data sharing. I am confident that this network will live on in some form also after the EUCAN projects end.”
Rotating roles and responsibilities in EUCAN ELSI’s meetings
The EUCAN ELSI Collaboratory initially planned to meet in face-to-face meetings. The group met physically in London in late 2019. However, when the COVID-19 pandemic hit, the team was forced to rethink the earlier plan and move the meetings online. The group meets every three months and has rotating meeting roles and responsibilities among all Collaboratory members. Each meeting has a Chair and a Vice-Chair, and the latter becomes the Chair of the next meeting when the role as Vice-Chair is handed over to the next member on the list.
In addition to being active in the EUCAN ELSI Collaboratory, EUCANCan’s Work Package 6 also works actively with a number of other external partners, such as The Global Alliance for Genomics and Health and the European Commission’s initiatives 1+ Million Genomes and the European Health Data Space.
From the top left: Pilar Nicolas (chair), Michaela Th Mayrhofer (chair), Bartha Knoppers, Alexander Bernier, Lauren Maxwell, Melanie Goisauf, Madeleine Murtagh, Thijs Devriendt, Fruzsina Molnar-Gabor, Stephanie Mulrine, Mikel Recuero, Emmanuelle Rial, Éloïse Gennet, Claudia Emerson