Session: Centering Patient Voices in Research and Practice
Why We Need Community-Based Participatory Research in Neuroethics
Thursday, October 23, 2025
10:30 AM - 11:30 AM Pacific Time
Location: B119
Arynn de Leeuw – Michgan State University; Ian Burkhart – BCI Pioneers Coalition; Eran Klein – University of Washington, Oregon Health and Sciences University; Sara Goering – University of Washington
Assistant Professor Michigan State University East Lansing, Michigan
Abstract: Empirical scholarship in neuroethics is growing, adding greater depth, context, and complexity to various conceptual and ethical issues (Starke et al., 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., 2020), and how brain implants impact research participants’ sense of agency (Klein et al. 2016). 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 (Patrick-Krueger et al. 2024), there have not been many efforts to promote iterative engagement between research participants and neuroethics researchers, which we will argue is an ethical and knowledge gap that should be addressed. This paper offers a conceptual argument and roadmap for why neuroethics researchers ought to pursue more bidirectional and iterative engagement with research participants of neural device trials. More specifically, we argue that the framework and practices of community-based participatory research (CBPR) can help fill in a key engagement gap not offered by unidirectional engagement: long-term relationship-building between Brain Pioneers and neuroethicists, creating opportunities for co-learning and mutual benefit. Uptake of CBPR can also help to bring research participants together, making space for community-empowerment so that they can collectively and actively advocate for their needs before, during, and after research.
Keywords: Engagement with research participants from implantable neural device studies, Community-based participatory research, Neuroethics and engagement
Learning Objectives:
After participating in this conference, attendees should be able to:
Understand and identify why many neuroethicists engage with research participants from implantable neural device studies using qualitative interviews and surveys.
Understand why neuroethicists ought to expand engagement practices with research participants from implantable neural device studies to include more bidirectional and power-sharing forms of engagement, such as community-based participatory research.
Understand the strengths and challenges with community-based participatory research, including concrete tools that promote inclusion of research participants (e.g., participatory data analysis).
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