Childhood Cancer International – Europe (CCI-Europe) shared a post on LinkedIn:
“Making genomic data sharing more ethical and family-centred is important because it helps improve research and care for children with cancer. As part of the ITCC PedCan project, CCI Europe organised a workshop with patient representatives from the UK, France, Germany, and the Netherlands, alongside the legal, ethics, and advocacy teams.
The group explored how to make consent easier, clearer, and safer for families, focusing on four main points:
- Timing: Helping families give consent at the right time.
- Scope: Explaining clearly what information can be shared.
- Understanding: Ensuring clarity, accessibility, and cultural sensitivity.
- Withdrawal: Respecting participants’ rights, while keeping research reliable.
Building on the workshop discussions, participants will work together to develop a joint declaration supporting genomic data sharing for research. The declaration will highlight that patients and families support data sharing when there are clear safeguards, transparency, and simplified consent processes.
A big thank you to all patient representatives for the invaluable contributions, to the CCI Europe patient advocates and team, Delphine Heenen, Michaela Willi, Willemijn Plieger, and Albina Hyseni Bocolli for the dedication, and to the project coordination team, Stefan Pfister and Patrick Kemmeren, for the participation and for keeping the patient perspective at the core.
Learn more about the Project at.”
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