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@ARTICLE{Apondo:303042,
      author       = {E. Apondo and K. Mehlis and A. Bruns and C. Schickhardt$^*$
                      and E. Winkler and A. Züger},
      title        = {{T}oward {P}atient {I}nvolvement and {R}epresentation in
                      the {G}overnance of {G}enomic {D}ata {A}rchives:
                      {D}eliberative {F}orums with {P}atients in {G}ermany.},
      journal      = {Public health genomics},
      volume       = {28},
      number       = {1},
      issn         = {1662-4246},
      address      = {Basel},
      publisher    = {Karger},
      reportid     = {DKFZ-2025-01489},
      pages        = {217 - 228},
      year         = {2025},
      abstract     = {Although it is generally agreed that the perspectives of
                      patients should be included in decision-making about genomic
                      data, patients rarely have a significant role in the
                      governance of genomic data archives (GDAs). Guidance on the
                      successful implementation of patient involvement (PI) in the
                      governance of GDAs is lacking. This study explores the
                      perspectives of German patients on PI in the governance of
                      GDAs and how these perspectives can be implemented to have
                      an impact on governance.We conducted 2 online deliberative
                      forums with 26 members of the cancer and rare diseases (RD)
                      communities in Germany. The forums were analyzed
                      qualitatively. The findings were discussed in a follow-up
                      dialogue event with 17 of the participants and 9 members of
                      a GDA (The German Human Genome-Phenome Archive, GHGA) (n =
                      26). Two patient coresearchers were involved in all phases
                      of the study.Five themes were identified: (a) motivations
                      for PI; (b) concerns about PI; (c) areas of governance in
                      which PI is required; (d) resources necessary for
                      implementation of PI; and (e) the form PI should take.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.},
      keywords     = {Humans / Germany / Genomics / Patient Participation / Male
                      / Female / Genome, Human / Databases, Genetic / Middle Aged
                      / Rare Diseases: genetics / Deliberative forums (Other) /
                      Genomic data archives (Other) / Governance (Other) / Patient
                      involvement (Other) / Representation (Other)},
      cin          = {D120},
      ddc          = {610},
      cid          = {I:(DE-He78)D120-20160331},
      pnm          = {314 - Immunologie und Krebs (POF4-314)},
      pid          = {G:(DE-HGF)POF4-314},
      typ          = {PUB:(DE-HGF)16},
      pubmed       = {pmid:40435999},
      doi          = {10.1159/000546172},
      url          = {https://inrepo02.dkfz.de/record/303042},
}