Responsible use of organoids in precision medicine: the need for active participant involvement

Author:

Lensink Michael A.1,Jongsma Karin R.1,Boers Sarah N.1,Noordhoek Jacquelien J.2,Beekman Jeffrey M.3,Bredenoord Annelien L.1ORCID

Affiliation:

1. Department of Medical Humanities, University Medical Center Utrecht, Utrecht University, PO Box 85500, 3508 GA Utrecht, The Netherlands

2. Dutch Cystic Fibrosis Foundation (NCFS), Dr. A. Schweitzerweg 3A, 3744 MG Baarn, The Netherlands

3. Department of Pediatric Pulmonology, Wilhelmina Children's Hospital, Regenerative Medicine Center, University Medical Center, Internal post KH.01.419.0, P.O. Box 85090, 3508 AB Utrecht, The Netherlands

Abstract

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.

Publisher

The Company of Biologists

Subject

Developmental Biology,Molecular Biology

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