Why We Need Community-Based Participatory Research (CBPR) in Neuroethics

Abstract Empirical scholarship in neuroethics is steadily growing, adding greater context and complexity to conceptual and ethical debates Starke et al. BMC Medical Ethics 25:89, 2024. For example, qualitive studies have been used to understand what it is like for research participants to take part in implantable neural device trials Kögel et al. BMC Medical Ethics 21:2, 2020. These studies are broadly unidirectional when considering their impact through the lens of engagement practices: engagement with research participants takes place through uptake of data collection processes, which are then analyzed for understanding and academic dissemination. Beyond one or two formal interactions (e.g., qualitative interviews, surveys) for data collection, with a few exceptions Illes et al. Frontiers in Communication 9:1267065, 2024, there have not been many efforts to promote iterative engagement between research participants and neuroethics researchers, which we will argue is a shortcoming that should be addressed. Focusing on research participants of implantable neural device trials or Brain Pioneers, this paper offers a conceptual argument and roadmap for why neuroethics researchers ought to pursue more bidirectional and iterative engagement with this community. Drawing on models in health science research, we argue that the framework of community-based participatory research (CBPR) can help fill in key engagement gaps not offered by unidirectional engagement: long-term relationship-building between Brain Pioneers and neuroethicists, creating opportunities for co-learning and mutual benefit. The CBPR framework can also help to further bring Brain Pioneers together, making space for community-empowerment so that they have increased capacities to collectively and actively advocate for their needs before, during, and after research. In addition, a CBPR partnership between neuroethicists and Brain Pioneers can better position neuroethics scholarship to identify and address immediate ethical concerns in implantable neural device research to ensure the fair and non-exploitative treatment of prospective and current research participants.