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Science and Engineering Ethics

, Volume 24, Issue 2, pp 479–504 | Cite as

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

  • Laura Specker SullivanEmail author
  • Eran Klein
  • Tim Brown
  • Matthew Sample
  • Michelle Pham
  • Paul Tubig
  • Raney Folland
  • Anjali Truitt
  • Sara Goering
Original Paper

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.

Keywords

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

Notes

Acknowledgements

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.

Funding

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

Ethical Approval

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.

References

  1. Birbaumer, N., Ghanayim, N., Hinterberger, T., Iversen, I., Kotchoubey, B., Kübler, A., Perelmouter, J., Taub, E., & Flor, H. (1999). A spelling device for the paralysed. Nature, 398, 297–298.CrossRefGoogle Scholar
  2. Blain-Moraes, S., Schaff, R., Gruis, K. L., Huggins, J. E., & Wren, P. A. (2012). Barriers to and mediators of brain–computer interface user acceptance: Focus group findings. Ergonomics, 55(5), 516–525.CrossRefGoogle Scholar
  3. Charlton, J. (1998). Nothing about us without us: Disability oppression and empowerment. California: University of California Press.CrossRefGoogle Scholar
  4. Chau, P. Y. K., & Tam, K. Y. (2000). Organizational adoption of open systems: A ‘technology-push, need-pull’ perspective. Informational and Management, 37, 229–239.CrossRefGoogle Scholar
  5. Collinger, J. L., Boninger, M. L., Bruns, T. M., Curley, K., Wang, W., & Weber, D. J. (2013). Functional priorities, assistive technology, and brain computer interfaces after spinal cord injury. Journal of Rehabilitation Research and Development, 50(2), 145–160.CrossRefGoogle Scholar
  6. Corbin, J. M., & Strauss, A. L. (2015). Basics of qualitative research: Techniques and procedures for developing grounded theory. Los Angeles: Sage.Google Scholar
  7. Grubler, G., Al-Khodairy, A., Leeb, R., Pisotta, I., Riccio, A., Rohm, M., & Hildt, E. (2014). Psychosocial and ethical aspects in non-invasive EEG-based, BCI Research—a survey among BCI users and BCI professionals. Neuroethics, 7, 29–41.CrossRefGoogle Scholar
  8. Hochberg, L., & Anderson, K. (2012). BCI users and their needs. In J. R. Wolpaw & E. W. Wolpaw (Eds.), Brain–computer interfaces (pp. 317–323). New York: Oxford University Press.Google Scholar
  9. Hochberg, L. R., Serruya, M. D., Friehs, G. M., Mukand, J. A., Saleh, M., Caplan, A. H., Branner, A., Chen, D., Penn, R. D., & Donoghue, J. P. (2006). Neuronal ensemble control of prosthetic devices by a human with tetraplegia. Nature, 442, 164–172.CrossRefGoogle Scholar
  10. Holz, E. M., Kaufmann, T., Desideri, L., Malavasi, M., Hoogerwerf, E.-J., & Kubler, A. (2012). User centred design in BCI development. In B. Allison, S. Dunne, R. Leeb, J. D. R. Millan & A. Nijholt (Eds.), Towards practical brain–computer interfaces (pp. 155–172). Berlin: Springer.CrossRefGoogle Scholar
  11. Huggins, J. E., Wren, P. A., & Gruis, K. L. (2011). What would brain–computer interface users want? Opinions and priorities of potential users with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 12(5), 318–324.CrossRefGoogle Scholar
  12. ISO 9241–210. (2008). Ergonomics of human system interaction—Part 210: Human-centred design for interactive systems (formerly known as 13407). International Organization for Standardization (ISO) Switzerland.Google Scholar
  13. Kübler, A., Mattia, D., Rupp, R., & Tangermann, M. (2013). Editorial: Facing the challenge: Bringing brain-computer interfaces to end users. Artificial Intelligence in Medicine, 59, 55–60.CrossRefGoogle Scholar
  14. Kübler, A., Müller-Putz, G., & Mattia, D. (2015). User-centred design in brain-computer interface research and development. Annals of Physical Rehabilitation and Medicine, 58(5), 312–314.CrossRefGoogle Scholar
  15. Kübler, A., Holz, E. M., Riccio, A., Zickler, C., Kaufmann, T., Kleih, S. C., Staiger-Salzer, P., Desideri, L., Hoogerwerf, E. J., & Mattia, D. (2014). The user-centered design as novel perspective for evaluating the usability of BCI-controlled applications. PLoS ONE. doi: 10.1371/journal.pone.0112392.Google Scholar
  16. Liberati, G., Pizzimenti, A., Simione, L., Riccio, A., Schettini, F., Inghilleri, M., Mattia, D., & Cincotti, F. (2015). Developing brain–computer interfaces from a user-centered perspective: Assessing the needs of persons with amyotrophic lateral sclerosis, caregivers, and professionals. Applied Ergonomics, 50, 139–146.CrossRefGoogle Scholar
  17. Lotte, F., Larrue, F., & Mühl, C. (2013). Flaws in current human training protocols for spontaneous brain-computer interfaces: Lessons learned from instructional design. Frontiers in Human Neuroscience, 7, 568.CrossRefGoogle Scholar
  18. McCullagh, P., Lightbody, G., Zygierewicz, J., & Kernohan, W. G. (2014). Ethical challenges associated with the development and deployment of brain computer interface technology. Neuroethics, 7, 109–122.CrossRefGoogle Scholar
  19. Murphy, M. D., Guggenmos, D. J., Bundy, D. T., & Nudo, R. J. (2016). Current challenges facing the translation of brain computer interfaces from preclinical trials to use in human patients. Frontiers in Cellular Neuroscience. doi: 10.3389/fncel.2015.00497.Google Scholar
  20. Nijboer, F. (2015). Technology transfer and of brain-computer interfaces as assistive technology: Barriers and opportunities. Annals of Physical and Rehabilitation Medicine, 58, 35–38.CrossRefGoogle Scholar
  21. Nijboer, F., Clausen, J., Allison, B. Z., & Haselager, P. (2013). The asilomar survey: Stakeholders’ opinions on ethical issues related to brain–computer interfacing. Neuroethics, 6, 541–578.CrossRefGoogle Scholar
  22. Powers, J. C., Bieliaieva, K., Wu, S., & Nam, C. S. (2015). The human factors and ergonomics of P300-based brain–computer interfaces. Brain Sciences, 5, 318–356.CrossRefGoogle Scholar
  23. Rao, R. (2013). Brain computer interfacing: An introduction. New York: Cambridge University Press.CrossRefGoogle Scholar
  24. Scherer, M. J. (2002). The change in emphasis from people to person: Introduction to the special issue on assistive technology. Disability and Rehabilitation, 24(1), 1–4.CrossRefGoogle Scholar
  25. Scherer, M. J., Sax, C., Vanbiervliet ,A., Cushman, L. A., & Scherer, J. V. (2005). Predictors of assistive technology use: The importance of personal and psychosocial factors. Disability and Rehabilitation, 27(21), 1321–1331.CrossRefGoogle Scholar
  26. Schicktanz, S., Amelung, T., Rieger, J. W. (2015). Qualitative assessment of patients’ attitudes and expectations toward BCIs and implications for future technology development. Frontiers in Systems Neuroscience, 9.Google Scholar
  27. Schon, D. (1967). Technology and social change. New York: Delacorte.Google Scholar
  28. Shih, J., Krusienski, D. J., & Wolpaw, J. R. (2012). Brain–computer interfaces in medicine. Mayo Clinical Proceedings, 87(3), 268–279.CrossRefGoogle Scholar
  29. Silvers, A. (2010). Better than new! ethics for assistive technologists. In M. M. K. Oishi, I. M. Mitchell, & H. F. M. Van der Loos (Eds.), Design and use of assistive technology: social, technical, ethical, and economic challenges (pp. 3–15). New York: Springer.Google Scholar
  30. Specker Sullivan, L., & Illes, J. (2016). Beyond “communication and control”: Towards ethically complete rationales for brain–computer interface research. Brain–Computer Interfaces, 3(3), 156–163.Google Scholar
  31. Williamson, T., Kenney, L., Barker, A. T., Cooper, G., Good, T., Healey, J., Heller, B., Howard, D., Matthews, M., Prenton, S., Ryan, J., & Smith, C. (2015). Enhancing public involvement in assistive technology design research. Disability and Rehabilitation Assistive Technology, 10(3), 258–265.CrossRefGoogle Scholar
  32. Wolbring, G., & Diep, L. (2016). Cognitive/neuroenhancement through an ability studies lens. In F. Jotterand & V. Dubljevic (Eds.), Cognitive enhancement: Ethical and policy implications in international perspectives (pp. 57–75). New York: Oxford University Press.CrossRefGoogle Scholar
  33. Wolpaw, J. R., & Wolpaw, E. W. (2012). Brain–computer interfaces: Principles and practice. New York: Oxford University Press.CrossRefGoogle Scholar
  34. Yuan, H., & He, B. (2014). Brain–computer interfaces using sensorimotor rhythms: Current state and future perspectives. IEEE Transactions in Biomedical Engineering, 61(5), 1425–1435.CrossRefGoogle Scholar
  35. Zickler, C., Halder, S., Kleih, S. C., Herbert, C., & Kübler, A. (2013). Brain painting: Usability testing according to the user-centered design in end users with severe motor paralysis. Artificial Intelligence in Medicine, 59(2), 99–110. https://doi.org/10.1016/j.artmed.2013.08.003.

Copyright information

© Springer Science+Business Media Dordrecht 2017

Authors and Affiliations

  1. 1.Center for Sensorimotor Neural Engineering (CSNE)University of WashingtonSeattleUSA
  2. 2.Department of PhilosophyUniversity of WashingtonSeattleUSA
  3. 3.Department of NeurologyOregon Health and Science UniversityPortlandUSA
  4. 4.National Core for NeuroethicsUniversity of British ColumbiaVancouverCanada

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