Toward Patient Involvement and Representation in the Governance of Genomic Data Archives: Deliberative Forums with Patients in Germany
For PI in GDAs to be meaningful, patient perspectives on the specific contextual aspects of GDAs should be actively sought. Patients' views on representation affect what form of PI they prefer and whether they experience the representation as legitimate. We discuss how the suggestions from the participants of this study were taken up in the governance policy of the GHGA.
Authors
- Christoph Schickhardt (ORCID: https://orcid.org/0000-0003-2038-1456)
- Eva Caroline Winkler (ORCID: https://orcid.org/0000-0001-7460-0154)
- Katja Mehlis (ORCID: https://orcid.org/0000-0001-6532-9876)
- Andrea Züger (ORCID: https://orcid.org/0000-0001-5540-780X)
- Eric Apondo
- Andreas Bruns (ORCID: https://orcid.org/0000-0002-1961-1691)
Institutions
- Heidelberg University (DE)
- University Hospital Heidelberg (DE)
- National Center for Tumor Diseases (DE)
Publication Details
- Journal
- Public Health Genomics
- Published
- 2025-05-28
- DOI
- https://doi.org/10.1159/000546172
- Citations
- 1
- Primary Topic
- Ethics in Clinical Research
- Type
- article
- Field-Weighted Citation Impact
- 1.88
Funders
- Deutsche Forschungsgemeinschaft