TY - JOUR
T1 - Mini-guts in a dish
T2 - Perspectives of adult Cystic Fibrosis (CF) patients and parents of young CF patients on organoid technology
AU - Boers, Sarah N.
AU - de Winter-de Groot, Karin M.
AU - Noordhoek, Jacquelien
AU - Gulmans, Vincent
AU - van der Ent, Cornelis K.
AU - van Delden, Johannes J.M.
AU - Bredenoord, Annelien L.
N1 - Copyright © 2018 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.
PY - 2018/5
Y1 - 2018/5
N2 - 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.
AB - 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.
KW - Biobanks
KW - Cystic Fibrosis
KW - Ethics
KW - Organoid technology
KW - Participatory medicine
KW - Qualitative interview study
UR - http://www.scopus.com/inward/record.url?scp=85042882661&partnerID=8YFLogxK
U2 - 10.1016/j.jcf.2018.02.004
DO - 10.1016/j.jcf.2018.02.004
M3 - Article
C2 - 29523474
AN - SCOPUS:85042882661
SN - 1569-1993
VL - 17
SP - 407
EP - 415
JO - Journal of Cystic Fibrosis
JF - Journal of Cystic Fibrosis
IS - 3
ER -