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000303042 041__ $$aEnglish
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000303042 1001_ $$aApondo, Eric$$b0
000303042 245__ $$aToward Patient Involvement and Representation in the Governance of Genomic Data Archives: Deliberative Forums with Patients in Germany.
000303042 260__ $$aBasel$$bKarger$$c2025
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000303042 520__ $$aAlthough 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.
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000303042 650_7 $$2Other$$aDeliberative forums
000303042 650_7 $$2Other$$aGenomic data archives
000303042 650_7 $$2Other$$aGovernance
000303042 650_7 $$2Other$$aPatient involvement
000303042 650_7 $$2Other$$aRepresentation
000303042 650_2 $$2MeSH$$aHumans
000303042 650_2 $$2MeSH$$aGermany
000303042 650_2 $$2MeSH$$aGenomics
000303042 650_2 $$2MeSH$$aPatient Participation
000303042 650_2 $$2MeSH$$aMale
000303042 650_2 $$2MeSH$$aFemale
000303042 650_2 $$2MeSH$$aGenome, Human
000303042 650_2 $$2MeSH$$aDatabases, Genetic
000303042 650_2 $$2MeSH$$aMiddle Aged
000303042 650_2 $$2MeSH$$aRare Diseases: genetics
000303042 7001_ $$aMehlis, Katja$$b1
000303042 7001_ $$aBruns, Andreas$$b2
000303042 7001_ $$0P:(DE-He78)599c5b5d9ad07235476360a5838508d9$$aSchickhardt, Christoph$$b3$$udkfz
000303042 7001_ $$aWinkler, Eva$$b4
000303042 7001_ $$aZüger, Andrea$$b5
000303042 773__ $$0PERI:(DE-600)2457026-6$$a10.1159/000546172$$gVol. 28, no. 1, p. 217 - 228$$n1$$p217 - 228$$tPublic health genomics$$v28$$x1662-4246$$y2025
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