Keeping Disability in Mind: A Case Study in Implantable Brain–Computer Interface Research

Laura Specker Sullivan, Eran Klein, Tim Brown, Matthew Sample, Michelle Pham, Paul Tubig, Raney Folland, Anjali Truitt, Sara Goering

Research output: Contribution to journalArticle

6 Citations (Scopus)

Abstract

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.

Original languageEnglish (US)
Pages (from-to)1-26
Number of pages26
JournalScience and Engineering Ethics
DOIs
StateAccepted/In press - Jun 22 2017

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disability
Research Personnel
Equipment and Supplies
Research
Technology
Interdisciplinary Studies
Interviews
Focus Groups
Caregivers
Uncertainty
End users
User centered design
engineering
User-centered design
experience
qualitative interview
caregiver
uncertainty

Keywords

  • Brain–computer interface
  • Brain–machine interface
  • Disability
  • Research ethics
  • User-centered design

ASJC Scopus subject areas

  • Health(social science)
  • Issues, ethics and legal aspects
  • Health Policy
  • Management of Technology and Innovation

Cite this

Keeping Disability in Mind : A Case Study in Implantable Brain–Computer Interface Research. / Sullivan, Laura Specker; Klein, Eran; Brown, Tim; Sample, Matthew; Pham, Michelle; Tubig, Paul; Folland, Raney; Truitt, Anjali; Goering, Sara.

In: Science and Engineering Ethics, 22.06.2017, p. 1-26.

Research output: Contribution to journalArticle

Sullivan, Laura Specker ; Klein, Eran ; Brown, Tim ; Sample, Matthew ; Pham, Michelle ; Tubig, Paul ; Folland, Raney ; Truitt, Anjali ; Goering, Sara. / Keeping Disability in Mind : A Case Study in Implantable Brain–Computer Interface Research. In: Science and Engineering Ethics. 2017 ; pp. 1-26.
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