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Mini-guts in a dish: Perspectives of adult Cystic Fibrosis (CF) patients and parents of young CF patients on organoid technology.
Boers, Sarah N; de Winter-de Groot, Karin M; Noordhoek, Jacquelien; Gulmans, Vincent; van der Ent, Cornelis K; van Delden, Johannes J M; Bredenoord, Annelien L.
Afiliación
  • Boers SN; Julius Center for Health Sciences and Primary Care, Department of Medical Humanities, University Medical Center Utrecht, Internal post Str. 6.131, P.O. Box 85500, 3508 GA Utrecht, The Netherlands. Electronic address: S.N.Boers@umcutrecht.nl.
  • de Winter-de Groot KM; Department of Pediatric Pulmonology, Wilhelmina Children's Hospital, University Medical Center Utrecht, Internal post KH.01.419.0, P.O. Box 85090, 3508 AB Utrecht, The Netherlands. Electronic address: K.M.deWinter@umcutrecht.nl.
  • Noordhoek J; Dutch Cystic Fibrosis Foundation (NCFS), Dr. A. Schweitzerweg 3A, 3744 MG Baarn, The Netherlands. Electronic address: J.Noordhoek@ncfs.nl.
  • Gulmans V; Dutch Cystic Fibrosis Foundation (NCFS), Dr. A. Schweitzerweg 3A, 3744 MG Baarn, The Netherlands. Electronic address: V.Gulmans@ncfs.nl.
  • van der Ent CK; Department of Pediatric Pulmonology, Wilhelmina Children's Hospital, University Medical Center Utrecht, Internal post KH.01.419.0, P.O. Box 85090, 3508 AB Utrecht, The Netherlands. Electronic address: K.vanderEnt@umcutrecht.nl.
  • van Delden JJM; Julius Center for Health Sciences and Primary Care, Department of Medical Humanities, University Medical Center Utrecht, Internal post Str. 6.131, P.O. Box 85500, 3508 GA Utrecht, The Netherlands. Electronic address: J.J.M.vanDelden@umcutrecht.nl.
  • Bredenoord AL; Julius Center for Health Sciences and Primary Care, Department of Medical Humanities, University Medical Center Utrecht, Internal post Str. 6.131, P.O. Box 85500, 3508 GA Utrecht, The Netherlands. Electronic address: A.L.Bredenoord@umcutrecht.nl.
J Cyst Fibros ; 17(3): 407-415, 2018 05.
Article en En | MEDLINE | ID: mdl-29523474
BACKGROUND: Organoid technology enables the cultivation of human tissues in a dish. Its precision medicine potential could revolutionize the Cystic Fibrosis (CF) field. We provide a first thematic exploration of the patient perspective on organoid technology to set the further research agenda, which is necessary for responsible development of this ethically challenging technology. METHODS: 23 semi-structured qualitative interviews with 14 Dutch adult CF patients and 12 parents of young CF patients to examine their experiences, opinions, and attitudes regarding organoid technology. RESULTS: Four themes emerged: (1) Respondents express a close as well as a distant relationship to organoids; (2) the open-endedness of organoid technology sparks hopes and concerns, (3) commercial use evokes cautiousness. (4) Respondents mention the importance of sound consent procedures, long-term patient engagement, responsible stewardship, and stringent conditions for commercial use. CONCLUSIONS: The precision medicine potential of organoid technology can only be realized if the patient perspective is taken adequately into account.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Participación del Paciente / Manejo de Atención al Paciente / Organoides / Fibrosis Quística Tipo de estudio: Qualitative_research Aspecto: Ethics / Patient_preference Límite: Adult / Child / Female / Humans / Male País/Región como asunto: Europa Idioma: En Revista: J Cyst Fibros Año: 2018 Tipo del documento: Article

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Participación del Paciente / Manejo de Atención al Paciente / Organoides / Fibrosis Quística Tipo de estudio: Qualitative_research Aspecto: Ethics / Patient_preference Límite: Adult / Child / Female / Humans / Male País/Región como asunto: Europa Idioma: En Revista: J Cyst Fibros Año: 2018 Tipo del documento: Article
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