Development · 2020 · 33 citations · 57 references
LawBiomedical SciencesBioethicsMedical EthicsPrecision MedicineBiobanking EthicsBiobanking RegulationParticipant ConfidentialityParticipant PrivacyPatient PrivacyStem Cell EthicsBiobanking ConsentBiomedical Research EthicsBroad ConsentData Privacy ProtectionDonor ConfidentialityPrecision Medicine EthicsResearch Participant RightsResponsible Use Of Technology
ABSTRACT Organoids are three-dimensional multicellular structures grown in vitro from stem cells and which recapitulate some organ function. They are derivatives of living tissue that can be stored in biobanks for a multitude of research purposes. Biobank research on organoids derived from patients is highly promising for precision medicine, which aims to target treatment to individual patients. The dominant approach for protecting the interests of biobank participants emphasizes broad consent in combination with privacy protection and ex ante (predictive) ethics review. In this paradigm, participants are positioned as passive donors; however, organoid biobanking for precision medicine purposes raises challenges that we believe cannot be adequately addressed without more ongoing involvement of patient-participants. In this Spotlight, we argue why a shift from passive donation towards more active involvement is particularly crucial for biobank research on organoids aimed at precision medicine, and suggest some approaches appropriate to this context.
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A Ladder Of Citizen Participation
Sherry R. Arnstein · Journal of the American Institute of Planners · 1969 · 15.7K citations
Dysfunction of the intestinal microbiome in inflammatory bowel disease and treatment
Xochitl C. Morgan, Timothy L. Tickle, Harry Sokol et al. · Genome biology · 2012 · 2.8K citations · Full text
Fused cerebral organoids model interactions between brain regions
Joshua A. Bagley, Daniel Reumann, Shan Bian et al. · Nature Methods · 2017 · 796 citations
Life Sciences, Anatomy, Neuroscience +13