动态治理:干细胞研究同意的新时代。
Dynamic governance: A new era for consent for stem cell research.
发表日期:2024 Aug 08
作者:
Rosario Isasi, Heidi B Bentzen, Morris Fabbri, Antonie Fuhr, Joel C Glover, Nancy Mah, Deborah Mascalzoni, Sabine Mueller, Stefanie Seltmann, Andreas Kurtz
来源:
Stem Cell Research & Therapy
摘要:
治理基础设施简化了人类多能干细胞 (SC) 系的科学和伦理来源验证。然而,科学发展(例如 SC 衍生胚胎模型、类器官)对存储生物样本的研究治理方法提出了挑战,质疑知情同意 (IC) 模型的有效性。同样,电子医疗平台正在推动数据处理的重大变革,促使人们重新评估 IC。鉴于这些发展,参与式研究平台被认为是促进纵向参与、互动决策和动态治理的有效工具。本视角借鉴了欧洲在生物样本库和 SC 研究中试点动态 IC 的举措,探讨了为 SC 实施动态 IC 和治理的好处和挑战。版权所有 © 2024 作者。由爱思唯尔公司出版。保留所有权利。
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.Copyright © 2024 The Author(s). Published by Elsevier Inc. All rights reserved.