Mini-gut feelings: Perspectives of people with cystic fibrosis on the ethics and governance of organoid biobanking

Michael A Lensink, Sarah N Boers, Vincent A M Gulmans, Karin R Jongsma, Annelien L Bredenoord

Published: May 2021


Aim: Organoid technology has enormous potential for precision medicine, such as has recently been demonstrated in the field of cystic fibrosis. However, storage and use of organoids has been associated with ethical challenges and there is currently a lack of harmony in regulation and guidelines to govern the rapid emergence of ‘organoid medicine’. Developing sound governance demands incorporation of the perspectives of patients as key stakeholders. Materials & methods: We conducted 17 semi-structured interviews with people with cystic fibrosis to explore their perspectives on the ethics and governance of organoid biobanking. Results: We identified three themes: prioritization of research and trust, ambivalent views on commercial involvement and transparency and control. Conclusion: Our study offers important insights for ethically robust governance of ‘organoid medicine’.

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