@article{7e59ba3a708549a7b7e2a6b4a94be2b1,
title = "Patients' perspectives on the derivation and use of organoids",
abstract = "Organoid research is enhancing understanding of human development and diseases as well as aiding in medication development and selection, raising hopes for even more future therapeutic options. Nevertheless, this work raises important ethical issues and there is a paucity of data regarding patients' perspectives on them. We report on 60 interviews with adult patients or parents of pediatric patients from diverse disease populations who receive medical care at a major academic research institution in the United States. Interviewees expressed broad support for organoid development and use. However, patients viewed brain organoids, and sometimes gonadal organoids, as morally distinct; and some organoid research poses moral concerns. Nonetheless, patients generally understood the potential value of such research and approved of it, provided it was aimed at good intent and conducted with ethical oversight and a robust consent process. These data should help inform conceptual and policy deliberations about appropriate organoid use.",
keywords = "ethics, organoids, patient perspectives, qualitative research",
author = "Juli Bollinger and Elizabeth May and Debra Mathews and Mark Donowitz and Jeremy Sugarman",
note = "Funding Information: Work on this project was supported by an ethics supplement to grant R01K116352 ( National Institutes of Health / National Institute of Diabetes and Digestive and Kidney Diseases ) as well as grant UO1DK103168 ( National Institutes of Health / National Institute of Diabetes and Digestive and Kidney Diseases ). The authors thank our Project Advisory Panel for sharing their technical expertise, helpful feedback on our study materials, and assistance with recruitment: Valina L. Dawson, PhD; Gabsang Lee, DVM, PhD; Jinchong Xu, MMed, PhD; and Donald J. Zack, MD, PhD. The authors also thank the following clinicians and their staff for their assistance in recruiting participants for this study: Robert Bulat, MD, MSc, PhD; James Handa, MD; Argye Hillis, MD; Nicholas Maragakis, MD; Kelly Mills, MD, MHS; Peter Moygazel, MD, PhD; Kate Perepzko; Pradeep Ramulu, MD, PhD; Heather Sateia, MD; Florin Selaru, MD; Mandeep Singh, MBBS, MD, PhD; Ellen Stein, MD; and Steven Zeiler, MD, PhD. Finally, the authors thank all of the study participants for sharing their time and perspectives with us. Publisher Copyright: {\textcopyright} 2021 The Authors",
year = "2021",
month = aug,
day = "10",
doi = "10.1016/j.stemcr.2021.07.004",
language = "English (US)",
volume = "16",
pages = "1874--1883",
journal = "Stem Cell Reports",
issn = "2213-6711",
publisher = "Cell Press",
number = "8",
}