Support for BRAIN Pioneers: Understanding and enhancing family and researcher support for participants in neural device trials
Saturday, October 14, 2023
10:30 AM – 11:45 AM ET
Location: Galena (Fourth Floor)
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. Our aim is to call attention to those critical but often unrecognized contributions, to better understand their impacts. We argue that care provided by family and researchers is integral to the success of studies and should be acknowledged more fully in the design of neural device trials. For instance, beyond treating family members as mainly providers of logistical support (e.g., rides to and from the experimental site), we explore three kinds of substantive support they provide to participants: (a) emotional/social, (b) identity holding, and (c) epistemic. Similarly, given the long-term, highly interactive nature of many neural device trials, researchers often provide key forms of support to participants. We consider how researcher-as-supporter and family/caregiver-as-team-member roles could be implemented or enhanced in future research design and practice.
Eran Klein, PhD, MD – Affiliate Assistant Professor, Philosophy, University of Washington; Erika Versalovic – Philosophy – University of Washington; Sara Goering – Professor, Philosophy, University of Washington