Abstract
BackgroundOrganoid technology is emerging rapidly as a valuable tool for precision medicine, particularly in the field of Cystic Fibrosis (CF). However, biobank storage and use of patient-derived organoids raises specific ethical and practical challenges that demand sound governance. We examined the perspectives of professionals affiliated with CF or organoids on the ethical aspects of organoid biobanking for CF precision medicine. By conducting this study parallel to the process of innovation and development of organoid biobanking, its findings are valuable for the design of responsible governance frameworks. MethodsTo identify relevant themes and attitudes we conducted 21 semi-structured qualitative interviews with professionals in the field of organoid technology, biobanking, or CF research and care. ResultsWe identified three key challenges, as well as the suggestions of professionals on how to address them: (1) The challenges associated with commercial involvement, trust, and ownership, (2) Navigating the blurring boundary between research and clinical care, (3) Appropriate approaches to the informed consent procedure. ConclusionSound governance of organoid biobanks aimed at precision medicine requires coming to terms with the fact that its stakeholders no longer belong to separate domains. Responsible governance should be aimed at finding a sound, context-sensitive balance between integration of ongoing co-operation and mutual consideration of interests, and maintaining a feasible and sustainable research climate.
Highlights
Organoid technology is emerging rapidly as a valuable tool for precision medicine, in the field of Cystic Fibrosis (CF)
We identified three key themes in the perspectives of professionals on the ethics and governance challenges of organoid biobanking for precision medicine purposes (Box 3)
Sharing monetary benefits with individual biobank participants was not supported, arguing that scientific progress is possible by virtue of a collection of different tissues, and that financial incentives may lead to a biased collection
Summary
Organoid technology is emerging rapidly as a valuable tool for precision medicine, in the field of Cystic Fibrosis (CF). Organoids are 3D cell structures cultivated in vitro that function on a basic level like actual organs. They are characterized by their ability to self-organize, consist of multiple cell types, and can be grown indefinitely [1]. Apies by more precisely targeting therapies to individual patients [5,6] This value has recently been demonstrated in Cystic Fibrosis (CF) research, by successfully screening drugs using intestinal organoids or ‘mini-guts’ for personalized targeting of treatment [7,8]. The HIT-CF (acronym for ‘ (Drug) Hits for Cystic Fibrosis’) project aims to follow-up on this breakthrough by expanding organoid-based drug screening to other CF patients in Europe
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