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@MISC{Apondo:285560,
      author       = {E. Apondo and A. Bruns and A. Züger and K. Mehlis and A.
                      Müller and F. Brunsmann and J. Eufinger$^*$ and S.
                      Parker$^*$ and C. Schickhardt$^*$ and E. Winkler and T. G.
                      Consortium},
      title        = {{P}atient {I}nvolvement in the {G}overnance of the {G}erman
                      {H}uman {G}enome-{P}henome {A}rchive ({GHGA}): {P}atients'
                      perspectives and recommendations for implementation},
      journal      = {Zenodo},
      address      = {Genève},
      publisher    = {CERN},
      reportid     = {DKFZ-2023-02426},
      year         = {2023},
      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.},
      keywords     = {Patient involvement (Other) / Governance (Other) / Genomic
                      data (Other) / Deliberative forums (Other) / Patient
                      co-researcher (Other) / Online deliberative forums (Other)},
      cin          = {D120 / W620},
      ddc          = {000},
      cid          = {I:(DE-He78)D120-20160331 / I:(DE-He78)W620-20160331},
      pnm          = {314 - Immunologie und Krebs (POF4-314)},
      pid          = {G:(DE-HGF)POF4-314},
      typ          = {PUB:(DE-HGF)16 / PUB:(DE-HGF)32},
      doi          = {doi.org/10.5281/zenodo.8099346},
      url          = {https://inrepo02.dkfz.de/record/285560},
}