Sarah N Boers1, Karin M de Winter-de Groot2, Jacquelien Noordhoek3, Vincent Gulmans4, Cornelis K van der Ent5, Johannes J M van Delden6, Annelien L Bredenoord7. 1. 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. 2. 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. 3. Dutch Cystic Fibrosis Foundation (NCFS), Dr. A. Schweitzerweg 3A, 3744 MG Baarn, The Netherlands. Electronic address: J.Noordhoek@ncfs.nl. 4. Dutch Cystic Fibrosis Foundation (NCFS), Dr. A. Schweitzerweg 3A, 3744 MG Baarn, The Netherlands. Electronic address: V.Gulmans@ncfs.nl. 5. 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. 6. 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. 7. 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.
Abstract
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.
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 CFpatients and 12 parents of young CFpatients 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.
Authors: Laura K Fawcett; Claire E Wakefield; Sheila Sivam; Peter G Middleton; Peter Wark; John Widger; Adam Jaffe; Shafagh A Waters Journal: ERJ Open Res Date: 2021-01-18