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

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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.

Original languageEnglish
Pages (from-to)407-415
Number of pages9
JournalJournal of Cystic Fibrosis
Volume17
Issue number3
DOIs
Publication statusPublished - May 2018

Keywords

  • Biobanks
  • Cystic Fibrosis
  • Ethics
  • Organoid technology
  • Participatory medicine
  • Qualitative interview study

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