Published June 30, 2023
| Version v1
Project milestone
Open
Patient Involvement in the Governance of the German Human Genome-Phenome Archive (GHGA): Patients' perspectives and recommendations for implementation
Authors/Creators
- 1. NCT Heidelberg
- 2. DKFZ Heidelberg
Description
This White Paper summarizes the findings from a participatory study that was conducted with patients in Germany from the cancer and rare diseases communities to explore their perspectives on patient involvement in the governance of genomic data archives in general and of the German Human Genome-Phenome Archive (GHGA) specifically. It also describes a concept for implementing meaningful patient involvement in the governance of GHGA, which can be adopted by other data infrastructures.
Notes
This project was funded by the Deutsche Forschungsgemeinschaft (DFG, German Research Foundation) as part of GHGA – The German Human Genome-Phenome Archive (www.ghga.de, Grant Number 441914366 (NFDI 1/1))