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.

Published: 01/05/2018

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.

Full Access Link: Journal of Cystic Fibrosis