The "wheels that keep me goin'": invisible forms of support for brain pioneers.

Abstract

Research participants in long-term, first-in-human trials of implantable neural devices (i.e., brain pioneers) are critical to the success of the emerging field of neurotechnology. How these participants fare in studies can make or break a research program. Yet, their ability to enroll, participate, and seamlessly exit studies relies on both the support of family/caregivers and care from researchers that is often hidden from view. The present study offers an initial exploration of the different kinds of support that play a role in neural device trials from the perspectives of brain pioneers and their support partners (spouses, paid caregivers, parents, etc.). Using a mixed methods approach (semi-structured, open-ended interviews and a survey) with interpretive grounded theory, we present narratives from a study of six pioneers -- four in brain-computer interface (BCI) trials, and two in deep brain stimulation (DBS) trials -- and five support partners, about their experiences of being supported and supporting participants in implantable neural device studies. Our findings indicate the substantial amount of work involved on the part of pioneers - and some support partners - to make these studies successful. A central finding of the study is that non-logistical forms of support - social, emotional, and epistemic support - play a role, alongside more widely acknowledged forms of support, such as transportation and physical and clinical care. We argue that developing a better understanding of the kinds of support that enable neurotechnology studies to go well can help bridge the gap between abstract ethical principles of caring for subjects and on-the-ground practice.