Keeping Disability in Mind: A Case Study in Implantable Brain–Computer Interface Research
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Brain–Computer Interface (BCI) research is an interdisciplinary area of study within Neural Engineering. Recent interest in end-user perspectives has led to an intersection with user-centered design (UCD). The goal of user-centered design is to reduce the translational gap between researchers and potential end users. However, while qualitative studies have been conducted with end users of BCI technology, little is known about individual BCI researchers’ experience with and attitudes towards UCD. Given the scientific, financial, and ethical imperatives of UCD, we sought to gain a better understanding of practical and principled considerations for researchers who engage with end users. We conducted a qualitative interview case study with neural engineering researchers at a center dedicated to the creation of BCIs. Our analysis generated five themes common across interviews. The thematic analysis shows that participants identify multiple beneficiaries of their work, including other researchers, clinicians working with devices, device end users, and families and caregivers of device users. Participants value experience with device end users, and personal experience is the most meaningful type of interaction. They welcome (or even encourage) end-user input, but are skeptical of limited focus groups and case studies. They also recognize a tension between creating sophisticated devices and developing technology that will meet user needs. Finally, interviewees espouse functional, assistive goals for their technology, but describe uncertainty in what degree of function is “good enough” for individual end users. Based on these results, we offer preliminary recommendations for conducting future UCD studies in BCI and neural engineering.
KeywordsBrain–machine interface Brain–computer interface Disability Research ethics User-centered design
The authors would like to thank all PIs at the CSNE for participating in this interview project. We also thank Judy Illes and the National Core for Neuroethics at the University of British Columbia for their assistance with the conceptualization of this project.
This work was supported by Award Number EEC-1028725 from the National Science Foundation. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Science Foundation.
Compliance with Ethical Standards
All procedures performed in studies involving human participants were in accordance with the ethical standards of the University of Washington Human Subjects Division and with the 1964 Helsinki declaration and its later amendments. Verbal informed consent was obtained from all individual participants included in the study.
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