Real‐time ethics engagement in biomedical research : Ethics from bench to bedside

EMBO Reports
Volume 21 Issue 2 5 February 2020

Real‐time ethics engagement in biomedical research : Ethics from bench to bedside
Jeremy Sugarman, Annelien L Bredenoord

Biomedical research inevitably involves ethical issues. Some raise broad public concerns, particularly when researchers obviously violate established ethical norms. For example, He Jiankui’s work using CRISPR/Cas9 to genetically modify human embryos to prevent HIV transmission, which resulted in the birth of the world’s first two gene‐edited babies, generated widespread condemnation of this use of human germline modifications. Ethical issues also arise in the earlier phases of basic research, such as the public release of the HeLa cell genome by the European Molecular Biological Laboratory that created controversy over privacy concerns. At other times, ethical issues are more subtle and may not be recognized as such or raise public concern. For instance, there are important ethical considerations related to using banked biospecimens in translational research. Similarly, creating neurological chimeric mouse models involves moral considerations related to the potential humanization of these models 1, and embryo models from human stem cells are entangled in debates about the moral status of the embryo 2.
Nonetheless, efforts should be taken to identify and manage ethical issues as early as possible in order to provide ethical guidance throughout the entire research process, and mitigate negative effects, harms and wrongs (K.R. Jongsma & A.L. Bredenoord, under review). In this paper, we describe how ethics expertise can contribute to biomedical research through real‐time engagement and some of the challenges associated with such efforts. To do so, we offer our experiences with two particular examples: organoid technology and umbilical cord blood (UCB) banking and transplantation…