Transparency and ongoing communication with participants in brain organoid research: Consensus of an interdisciplinary working group

Betty Cohn; Megan Doerr; Pamela Feliciano; Stephanie M Fullerton; Saskia Hendriks; Soren Holm; Insoo Hyun; Karin Jongsma; Karen M Meagher; M Elizabeth Ross; Jason L Stein; Sharon F Terry; Katherine E MacDuffie

doi:10.1016/j.stemcr.2025.102546

Transparency and ongoing communication with participants in brain organoid research: Consensus of an interdisciplinary working group

Stem Cell Reports. 2025 Sep 9;20(9):102546. doi: 10.1016/j.stemcr.2025.102546. Epub 2025 Jun 26.

Authors

Affiliations

¹ Institute for Public Health Genetics, University of Washington, Seattle, WA, USA.
² Sage Bionetworks, Seattle, WA, USA.
³ Division of Genetics & Genomics, Department of Pediatrics, Boston Children's Hospital, Boston, MA, USA.
⁴ Institute for Public Health Genetics, University of Washington, Seattle, WA, USA; Department of Bioethics & Humanities, University of Washington School of Medicine, Seattle, WA, USA.
⁵ NIH Clinical Center Department of Bioethics, Bethesda, MD, USA.
⁶ Centre for Social Ethics and Policy, University of Manchester, Manchester, UK; Center for Medical Ethics, HELSAM, University of Oslo, Oslo, Norway.
⁷ Museum of Science, Boston, MA, USA; Center for Bioethics, Harvard Medical School, Boston, MA, USA.
⁸ Bioethics and Health Humanities, University Medical Center, Utrecht University, Utrecht, the Netherlands.
⁹ Biomedical Ethics Research Program, Mayo Clinic, Rochester, MN, USA.
¹⁰ Center for Neurogenetics, Feil Family Brain and Mind Research Institute, Weill Cornell Medicine, New York, NY, USA.
¹¹ Department of Genetics and UNC Neuroscience Center, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA.
¹² Genetic Alliance, Damascus, MD, USA.
¹³ Treuman Katz Center for Pediatric Bioethics and Palliative Care, Seattle Children's Research Institute, Seattle, WA, USA; Department of Pediatrics, University of Washington School of Medicine, Seattle, WA, USA. Electronic address: kate.macduffie@seattlechildrens.org.

Abstract

Stem cell-based models of the human brain benefit from biospecimens that can be used for a broad range of future research. But current regulations do not address the desire of research participants to remain engaged beyond initial biospecimen donation. We present practicable strategies for engaging participants while preserving scientific potential.

Publication types

Consensus Statement

MeSH terms

Biomedical Research* / trends
Brain* / physiology
Communication*
Humans
Information Dissemination
Informed Consent
Interdisciplinary Research
Organoids* / physiology
Specimen Handling