Caring for BRAIN pioneers: Understanding and enhancing family and researcher support in neural device trials

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Project abstract BRAIN pioneers are people who take on significant risk as participants in first-in-human or early neurotechnology studies for the sake of helping to further science. Their willingness to try invasive and non- medically necessary devices, their investments of significant time and energy, and their close relationships with study teams, typically built over 3-5 years of intensive experiments, make them relatively unique as research participants. Their well-being is integral to the continued development of the field of neural technology, yet relatively little neuroethical attention has been focused on the structures of support, from researchers and from family members, that enable BRAIN pioneers to successfully participate in neural device trials. In this study, we: 1) Utilize an embedded ethicist to observe interactions between participants in long-term, implantable neural device trials, their family partners, and the research team to identify modes of care and support provided in the experimental setting; 2) Use qualitative interviewing to explore how participants, family members and researchers articulate the role, benefits, and limitations of family and researcher care and support before, during, and after a trial; and 3) Develop recommendations for best practices for a more inclusive support structure in research design and practice.