Meeting with the Patient Advisory Board for Cancer Research at the DKFZ
- 31 Jul 2026
- Ulrike Träger
In order to incorporate patients’ perspectives into the ongoing refinement of GHGA and to promote the utilisation of genomic data, we at GHGA engage in regular dialogue with those affected. This dialogue supports not only the development of information resources and communication initiatives, but also the development of patient-centred governance processes.
The German Cancer Research Center (DKFZ), as the coordinating institution of GHGA, allows us access to well-established structures for patient involvement. Through this collaboration, we engaged with the Patient Advisory Board for Cancer Research - an experienced body that facilitates dialogue between researchers and patients - and were able to incorporate its perspectives into GHGA’s future work.
During a joint meeting, we introduced GHGA, its processes for the responsible sharing of genomic data for research, and the new information portal Meine Genomdaten. Teilen und Helfen. We presented and discussed GHGA’s objectives and activities and gathered feedback from the patients’ perspective.
Members of the Patient Advisory Board shared their views on the sharing and use of genomic data, the understandability of information, data protection, and trust. Building on its 2023 statement on the right to data use and data protection, the Board contributed valuable insights that helped us better understand patients’ expectations, concerns, and potential barriers to genomic data sharing.
GHGA would like to thank the Patient Advisory Board for Cancer Research at the DKFZ for the open and constructive dialogue. Their valuable feedback will help ensure that patient-centred perspectives continue to inform the further development of GHGA.