Mini-guts in a dish: Perspectives of adult Cystic Fibrosis (CF) patients and parents of young CF patients on organoid technology

Sarah N Boers; Karin M de Winter-de Groot; Jacquelien Noordhoek; Vincent Gulmans; Cornelis K van der Ent; Johannes J M van Delden; Annelien L Bredenoord

doi:10.1016/j.jcf.2018.02.004

Mini-guts in a dish: Perspectives of adult Cystic Fibrosis (CF) patients and parents of young CF patients on organoid technology

J Cyst Fibros. 2018 May;17(3):407-415. doi: 10.1016/j.jcf.2018.02.004. Epub 2018 Mar 6.

Authors

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

Affiliations

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.

PMID: 29523474
DOI: 10.1016/j.jcf.2018.02.004

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.

Keywords: Biobanks; Cystic Fibrosis; Ethics; Organoid technology; Participatory medicine; Qualitative interview study.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Adult
Child
Cystic Fibrosis* / psychology
Cystic Fibrosis* / therapy
Female
Humans
Industrial Development
Male
Netherlands
Organoids*
Parents
Patient Care Management* / ethics
Patient Care Management* / methods
Patient Participation / methods*
Precision Medicine / ethics
Precision Medicine / methods
Public Opinion
Qualitative Research