TY  - CHART
AU  - Apondo, Eric
AU  - Bruns, Andreas
AU  - Züger, Andrea
AU  - Mehlis, Katja
AU  - Müller, Anne
AU  - Brunsmann, Frank
AU  - Eufinger, Jan
AU  - Parker, Simon
AU  - Schickhardt, Christoph
AU  - Winkler, Eva
AU  - Consortium, The GHGA
TI  - Patient Involvement in the Governance of the German Human Genome-Phenome Archive (GHGA): Patients' perspectives and recommendations for implementation
JO  - Zenodo
CY  - Genève
PB  - CERN
M1  - DKFZ-2023-02426
PY  - 2023
AB  - 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.
KW  - Patient involvement (Other)
KW  - Governance (Other)
KW  - Genomic data (Other)
KW  - Deliberative forums (Other)
KW  - Patient co-researcher (Other)
KW  - Online deliberative forums (Other)
LB  - PUB:(DE-HGF)16 ; PUB:(DE-HGF)32
DO  - DOI:doi.org/10.5281/zenodo.8099346
UR  - https://inrepo02.dkfz.de/record/285560
ER  -