Public Participation and Ethics Communication in Brain Research, Innovation, and Health

Katherine Bassil, received her PhD in neuroscience and neuroethics from Maastricht University in 2023. She is assistant professor in neuroethics at the Julius Center at the University Medical Center Utrecht (UMCU) in the Netherlands. She is a former Harvard Neuroethics Fellow (2022) and Niels Sentence Fellow(2024). Her research focuses on a range of work in the field of neuroethics including the ethics of biomarkers for psychiatric disorders, the moral value of neuroscience models, the ethics of AI in brain and mental healthcare, neuroethics communication, among others. Beyond her research, Dr. Bassil is engaged in science policy and public outreach. She is a committee member of the International Neuroethics Society(INS) and former co-lead of the public communication Affinity Group. She is also an editorial assistant at Neuroethics Canada where she assisted in the editing of several volumes in the Elsevier series Developments in Neuroethics and Bioethics. She is also involved in global neuroethics initiatives as the ethics lead for the IEEE Neuroethics Framework Wellness Workgroup, a member of the International Brain Initiative (IBI) Cross-cultural Working Group, the Research Ethics track lead at the Atlas Bioethics Center, and co-founder of the Arab Neuroethics Network. Dr. Bassil is also the founder of Neuroethics Today, and educational platform dedicated to raising awareness on neuroethics worldwide and democratizing neuroethics literacy.J. Lomax Boyd is a neuroscientist and ethicist. He investigates scientific and ethical questions raised by human brain models generated through genetic engineering, xenotransplantation, and in vitro brain organogenesis. His research explores the neurobiological mechanisms that contribute to human brain development, cognitive function, and moral status, with a particular interest in incorporating philosophical and empirical bioethics into neuroscientific research, training, and education. Currently, Dr. Boyd is an Assistant Research Professor at Johns Hopkins University and Visiting Fellow at The Rockefeller University, Laboratory of Neurogenetics of Language. He previously served as a Civic Science Fellow focused on ethical issues raised by human brain organoids and Fulbright Scholar in new media science communication. He conducted his postdoctoral research at The Rockefeller University on the neurobiological origins of spoken language and received his doctoral training in developmental neurobiology at Duke University, where he investigated genetic mechanisms of human corticogenesis and brain evolution.

• PrefaceKatherine Bassil and J. Lomax BoydSection I: The imperative for ethics communication1. The Relevance of Responsible Conceptualization for Ethics Communication in Research and InnovationArleen Salles and Michele Farisco2. Beyond Access and Participation: Communicative Justice and the Human Right to ScienceAntonia Faustini3. Rethinking the Narrative of the Insufficiency of Human Rights on the NeuroRights DiscourseDiego BorbónSection II: Cross-cultural and national perspectives4. Faith and Culture in Neuroethics: Implications for Ethical CommunicationAmna Farooq5. Neurohype Across Borders: How Media Narratives Shape Public Perception of Neurotechnology in English- and Spanish-Speaking CountriesClaudia González-Márquez and Eleanor Stamp6. Communicating Ethically Sensitive Neuroscience in the Digital Age: the Case of Human Cerebral OrganoidsAndrea Lavazza and Federica SaquellaSection III: Ethics communication in clinical research7. Shared Responsibilities for Communicating Neuroscience Research: A Case Study for Spinal Cord InjuryTanya A. Barretto, Salwa B. A. Malhas, Samantha P. Go and Judy Illes8. Reflective Accounts from Collaborative Neuro-oncology Research: Perspectives from Patient Partners and ResearchersA. M. de Sain, M.E.G. ten Hoor-Suykerbuyk, P. Horstman, A. Janssens, L. Lieverse, C. Ruis, T. Seute and Margot Zomers9. Ethical Challenges to the Responsible Communication of Individual Results from Observational Neurodegeneration ResearchDeven K. Burks and Jane S. PaulsenSection IV: Looking to the future10. Preparedness Under Conditions of Polarization: Media Logics and the Public Positioning of NeuroethicsAlexander Sobieska11. Foresight Scenarios as Communicative Instruments in Anticipatory NeuroethicsKatharina Kleine and Laura Bechthold12. Draw Closer to Me: Participatory Visual Storytelling to Include Socio-Cultural Perspectives in Neuroethics and PolicymakingMarietjie Wilhelmina Maria Botes