Journal Article/Dataset

DKFZ-2023-02426

http://join2-wiki.gsi.de/foswiki/pub/Main/Artwork/join2_logo100x88.png Patient Involvement in the Governance of the German Human Genome-Phenome Archive (GHGA): Patients' perspectives and recommendations for implementation

Apondo, E. ; Bruns, A. ; Züger, A. ; Mehlis, K. ; Müller, A. ; Brunsmann, F. ; Eufinger, J.DKFZ* ; Parker, S.DKFZ* ; Schickhardt, C.DKFZ* ; Winkler, E. ; Consortium, T. G.

2023
CERN Genève

Abstract: 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.

Keyword(s): Patient involvement ; Governance ; Genomic data ; Deliberative forums ; Patient co-researcher ; Online deliberative forums

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Contributing Institute(s):

1. D120 Angewandte Tumor-Immunität (D120)
2. German Human Genome-Phenome Archive (W620)

Research Program(s):

1. 314 - Immunologie und Krebs (POF4-314) (POF4-314)

Appears in the scientific report 2023

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