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Short abstract:

This paper explores two cases where participants in first-in-human trials of neural devices ("brain pioneers") had high or low expectations about the neurotechnology implanted in their brain. We explore how these varying expectations are managed by researchers and brain pioneers.

Long abstract:

Research participants in long-term, first-in-human trials of implantable neural devices (“brain pioneers”) are critical to the success of the emerging field of neurotechnology (e.g., Neuralink, brain-computer interfaces (BCIs), deep brain stimulation (DBS) for treatment-resistant depression, etc.). Brain pioneers’ motivations to enroll, participate, and seamlessly exit studies often rely on the management of high and low expectations. Our paper considers two distinct examples, one involving DBS (a neural device that remains active 24/7), the other involving BCIs (a neural device that is usually activated only during laboratory research sessions). First, we explore a case where a DBS pioneer with treatment-resistant depression did not expect the DBS to work at all, and continued to believe it was not working for years, even after no longer meeting the criteria for depression. Second, we consider various ways in which the daily expectations of BCI pioneers are managed at the lab – e.g., how do they cope with not being able to complete a computer task with their neural device? From 2023 to 2024, we conducted eleven open-ended interviews: six with brain pioneers (four iBCI users and two DBS users) and five with their care partners (spouses, caregivers, or parents). Drawing on qualitative data obtained from these interviews, this paper explores fluctuations in the expectations of brain pioneers in the context of participating in neural device trials.