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Dynamic governance: A new era for consent for stem cell research

Year: 2024

Type: article

Abstract: Governance infrastructures streamline scientific and ethical provenance verification of human pluripotent stem cell (SC) lines. Yet, scientific developments (e.g., SC-derived embryo models, organoids) challenge research governance approaches to stored biospecimens, questioning the validity of informed consent (IC) models. Likewise, e-health platforms are driving major transformations in data processing, prompting a reappraisal of IC. Given these developments, participatory research platforms are identified as effective tools to promote longitudinal engagement, interactive decision-making, and dynamic governance. Learning from European initiatives piloting dynamic IC for biobanking and SC research, this Perspective explores the benefits and challenges of implementing dynamic IC and governance for SC.

Source: Stem Cell Reports

DOI: 10.1016/j.stemcr.2024.07.006

Authors: Rosario Isasi, Heidi B. Bentzen, Morris Fabbri, Antonie Fuhr, Joel C. Glover, Nancy Mah, Deborah Mascalzoni, Sabine Mueller, Stefanie Seltmann, Andreas Kurtz

Institutions: Dr. John T. Macdonald Foundation, Norwegian Institute of Public Health, University of Oslo, Cancer Registry of Norway, Fraunhofer Institute for Biomedical Engineering, Oslo University Hospital, Uppsala University

Language: English

Topic: Ethics in Clinical Research

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

Open Access status: gold

Estimated APC paid: $3,990

Funders: European Commission, Norges Forskningsråd, Provincia autonoma di Bolzano - Alto Adige, Horizon 2020 Framework Programme, HORIZON EUROPE Framework Programme

Awards: G2009546754, G3143200074, G3583818395, Embedding a comprehensive ethical dimension to organoïd-based research and resulting technologies, G4316678097, G4321883384, G434337789, Induced pluripotent stem cell-based therapy for spinal regeneration, G4937468798, human pluripotent stem cell registry - hPSCreg, G5831872518, G5844463706, G6390370581, Responsible Open Science in Europe, G8895167823

OpenAlex ID: W4401611558

FWCI: 6.41

Cites: 40

Cited by: 17

Related to: 10