On October 29, the EUCAN ELSI Collaboratory hosted the webinar “International Data Sharing: Fostering Engagement, Transparency and Accountability”, supported by the EUCAN Dissemination and Communication Group led by EUCANCan. The webinar focused on how fostering stakeholder engagement can improve transparency and accountability in international sharing of health data.
A recording of the webinar is available on the CINECA project’s YouTube channel.
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Session 1
The two-hour webinar consisted of two parts, both chaired by members of EUCANCan. The first session, chaired by Pilar Nicolás Jiménez, University of the Basque Country, Spain, included four 15-minute presentations by Michaela Mayrhofer, Thijs Devriendt, Lauren Maxwell, and Alexander Bernier, respectively. A short biography of each speaker can be found here.
In the first presentation, Michaela Mayrhofer talked about the S in the ELSI acronym (Ethical, Legal and Social Aspects research). Her talk focused on societal engagement and the importance of trust in the context of international health data sharing.
The second speaker of the day, Thijs Devriendt, focused on incentives for data sharing and how researcher reluctance to sharing data can cause a public interest harm. Thijs Devriendt pondered whether data-sharing platforms will be sufficient to address today’s lack of data sharing.
Lauren Maxwell’s presentation focused on broad consent for future use of health data, the reuse of data and/or samples collected by researchers who may not be affiliated with the original study team for purposes that may differ from the objectives of the original study. She examined the balancing act of weighting an ethical imperative to maximise the utility of shared data against the prevention of unnecessary research.
The final speaker of the day was Alexander Bernier. From the perspective of EUCANCan, he discussed the intersection between data protection law and the international sharing of biomedical data, health data and the reuse of information for purposes such as personalised medicine or research.
Session 2
The second session, chaired by Bartha Maria Knoppers, McGill University, Canada, began with a Q&A where the speakers elaborated on some of the points discussed in their presentations. The Q&A was followed by recommendations for the future of health data sharing, provided by researchers from the EUCAN ELSI Collaboratory. Themes discussed in this session include how strong incentive or data sharing across consortia can be embedded into research projects and what it could mean for the future of data sharing if national governments were to implement special-purpose legislation enabling the secondary use of personal data for general public interest purposes in the health sector.
The EUCAN ELSI Collaboratory will continue the discussions initiated during the webinar in their future meetings. Stay tuned for updates on EUCANCan and the project’s engagement in the EUCAN ELSI Collaboratory and the EUCAN Dissemination and Communication Group.