Brain-Computer Interfaces, Inclusive Innovation, and the Promise of Restoration: A Mixed-Methods Study with Rehabilitation Professionals

Abstract

Over the last two decades, researchers have promised “neuroprosthetics” for use in physical rehabilitation and to treat patients with paralysis. Fulfilling this promise is not merely a technical challenge but is accompanied by consequential practical, ethical, and social implications that warrant sociological investigation and careful deliberation. In response, this paper explores how rehabilitation professionals evaluate the development and application of BCIs. It thereby also asks how the BCIs come to be seen as desirable or not, and implicitly, what types of persons, rights, and responsibilities are assumed in this discourse. To this end, we conducted a web-based survey (N=135) and follow-up interviews (N=15) with Canadian professionals in physical therapy, occupational therapy, and speech-language pathology. We find that rehabilitation professionals, like other publics, express hope and enthusiasm regarding the use of BCIs for assistive purposes. They envision BCI devices as powerful means to reintegrate patients and disabled people into social life but also express practical and ethical reservations about the technology, positioning themselves as uniquely qualified to inform responsible BCI design and implementation. These results further illustrate the nascent “co-production” of neural technologies and social order. More immediately, they also pose a serious challenge for implementing frameworks of responsible innovation; merely prescribing more inclusive technology development may not counteract technocratic processes and widely held ableist views about the need to augment certain bodies using technology.

References

Akay, Metin, ed. 2007. Handbook of Neural Engineering. Hoboken, NJ: John Wiley & Sons.

Audétat, Marc. 2015. “Why so Many Promises? The Economy of Scientific Promises and its Ambivalences.” In Knowing New Biotechnologies: Social Aspects of Technological Convergence, edited by Matthias Wienroth and Eugénia Rodrigues, 29–43. New York, NY and Abingdon: Routledge.

Berinsky, Adam J., Michele F. Margolis, and Michael W. Sances. 2014. “Separating the Shirkers from the Workers? Making Sure Respondents Pay Attention on Self-Administered Surveys.” American Journal of Political Science 58(3): 739–753.

https://doi.org/10.1111/ajps.12081.

Blume, Stuart. 2009. The Artificial Ear. Cochlear Implants and the Culture of Deafness. New Brunswick, NJ: Rutgers University Press.

Boehlen, Wren, and Matthew Sample. 2020. “Rehabilitation Culture and Its Impact on Technology: Unpacking Practical Conditions for Ultrabilitation.” Disability and Rehabilitation 42(11): 1490–1494.

https://doi.org/10.1080/09638288.2018.1550531.

Buetow, Stephen A., Pablo Martínez-Martín, and Brendan McCormack. 2019. “Ultrabilitation: Beyond Recovery-oriented Rehabilitation.” Disability and Rehabilitation 41(6): 740–745.

https://doi.org/10.1080/09638288.2017.1406997.

Burwell, Sasha, Matthew Sample, and Eric Racine. 2017. “Ethical aspects of brain computer interfaces: a scoping review.” BMC Medical Ethics 18(1): 1–11.

https://doi.org/10.1186/s12910-017-0220-y.

Canadian Association of Occupational Therapists. 2012. “Profile of Practice of Occupational Therapists in Canada.” Accessed February 15, 2021.

https://www.caot.ca/document/3653/2012otprofile.pdf.

Collins, Harry, Robert Evans, and Mike Gorman. 2007. “Trading Zones and Interactional Expertise.” Studies in History and Philosophy of Science Part A 38(4): 657–666.

https://doi.org/10.1016/j.shpsa.2007.09.003.

Cowie, Roddy. 2011. “Editorial: ‘Ethics and Good Practice’—Computers and Forbidden Places: Where Machines May and May Not Go.” In Emotion-Oriented Systems: The Humaine Handbook, edited by Roddy Cowie, Catherine Pelachaud, and Paolo Petta, 707–711. Berlin and Heidelberg: Springer.

https://doi.org/10.1007/978-3-642-15184-2.

De Vries, Raymond. 2005. “Framing Neuroethics: A Sociological Assessment of the Neuroethical Imagination.” The American Journal of Bioethics 5(2): 25–27.

https://doi.org/10.1080/15265160590960267.

⸻. 2007. “Who Will Guard the Guardians of Neuroscience? Firing the Neuroethical Imagination.” EMBO Reports 8(1): 65–69.

Djebrouni, Manel, Shanon Phelan, Heather Aldersey, and Gregor Wolbring. 2019. “Utility of Science, Technology and Innovation Governance for Occupational Discourses From the Perspective of Occupational Therapy Students.” Work 64(2): 249–270.

https://doi.org/10.3233/WOR-192990.

Ereifej, Evon S., Courtney E. Shell, Jonathon S. Schofield, Hamid Charkhkar, et al. 2019. “Neural Engineering: The Process, Applications, and Its Role in the Future of Medicine.” Journal of Neural Engineering 16(6): 1–11.

https://doi.org/10.1088/1741-2552/ab4869.

Funk, Carl, Brian Kennedy, and Elizabeth P. Sciupac. 2016. “U.S. Public Wary of Biomedical Technologies to ‘Enhance’ Human Abilities.” Pew Research Center Science & Society, July 26, 2016. Accessed December 15, 2020.

https://www.pewresearch.org/science/2016/07/26/u-s-public-wary-of-biomedical-technologies-to-enhance-human-abilities/.

Gibson, Barbara E., and Gail Teachman. 2012. “Critical Approaches in Physical Therapy Research: Investigating the Symbolic Value of Walking.” Physiotherapy Theory and Practice 28(6): 474–484.

https://doi.org/10.3109/09593985.2012.676936.

Hammell, Karen W. 2010. “Contesting Assumptions in Occupational Therapy.” In Occupational Therapy and Physical Dysfunction: Enabling Occupation, edited by Michael Curtin, Matthew Molineux, and Jo-Anne Supyk-Mellson, Sixth Edition, 39–54. Edinburgh: Elsevier.

⸻. 2015. “Rethinking Rehabilitation’s Assumptions: Challenging ‘Thinking-as-Usual’ and Envisioning a Relevant Future.” In Rethinking Rehabilitation: Theory and Practice, edited by Kathryn McPherson, Barbara E. Gibson and Aalain Leplège, 45–68. Boca Raton, FL: CRC Press.

Hsieh, Hsiu-Fang, and Sarah E. Shannon. 2005. “Three Approaches to Qualitative Content Analysis.” Qualitative Health Research 15(9): 1277–1288.

https://doi.org/10.1177/1049732305276687.

Jasanoff, Sheila. 2004. States of Knowledge: The Co-Production of Science and Social Order. New York, NY and London: Routledge.

⸻. 2016. “Perfecting the Human: Posthuman Imaginaries and Technologies of Reason.” In Perfecting Human Futures: Transhuman Visions and Technological Imaginations, edited by J. Benjamin Hurlbut and Hava Tirosh-Samuelson, 73–95. Wiesbaden: Springer VS.

Jebari, Karim, and Sven-Ove Hansson. 2013. “European Public Deliberation on Brain Machine Interface Technology: Five Convergence Seminars.” Science and Engineering Ethics 19(3): 1071–1086.

https://doi.org/10.1007/s11948-012-9425-0.

Joly, Pierre-Benoît. 2010. “On the Economics of Techno-Scientific Promises.” In Débordements : Mélanges Offerts à Michel Callon, edited by Madeleine Akrich, Yannick Barthe, Fabian Muniesa, and Philippe Mustar, 203–221. Paris: Mines Press.

Klein, Eran, Sara Goering, Josh Gagne, Conor V. Shea, et al. 2016. “Brain-Computer Interface-Based Control of Closed-Loop Brain Stimulation: Attitudes and Ethical Considerations.” Brain-Computer Interfaces 3(3): 140–148.

https://doi.org/10.1080/2326263X.2016.1207497.

Kögel, Johannes, Ralf J. Jox, and Orsolya Friedrich. 2020. “What Is It Like to Use a BCI?—Insights From an Interview Study With Brain-Computer Interface Users.” BMC Medical Ethics 21(1): 1–14.

https://doi.org/10.1186/s12910-019-0442-2.

Kögel, Johannes, and Gregor Wolbring. 2020. “What it Takes to Be a Pioneer: Ability Expectations from Brain-Computer Interface Users.” NanoEthics 14(3): 227–239.

https://doi.org/10.1007/s11569-020-00378-0.

Leuthardt, Eric C., Gerwin Schalk, Jonathan R. Wolpaw, Jeffrey G. Ojemann, et al. 2004. “A Brain–Computer Interface Using Electrocorticographic Signals in Humans.” Journal of Neural Engineering 1(2): 63–71.

https://doi.org/10.1088/1741-2560/1/2/001.

Madsen, Miriam, Rana el Kaliouby, Micah Eckhardt, Mohammed E. Hoque, et al. 2009. “Lessons From Participatory Design With Adolescents on the Autism Spectrum.” CHI ’09 Extended Abstracts on Human Factors in Computing Systems, Boston, MA, 3835–3840.

https://doi.org/10.1145/1520340.1520580.

Magasi, Susan. 2008. “Infusing Disability Studies into the Rehabilitation Sciences.” Topics in Stroke Rehabilitation 15(3): 283–287.

https://doi.org/10.1310/tsr1503-283.

Marcus, Steven J., ed. 2002. Neuroethics: Mapping the Field. New York: Dana Press.

Mauldin, Laura. 2014. “Precarious plasticity: Neuropolitics, Cochlear Implants, and the Redefinition of Deafness.” Science, Technology, & Human Values 39(1): 130–153.

https://doi.org/10.1177/0162243913512538.

Muller, Michael J. 2003. “Participatory Design: The Third Space in HCI.” In The Human-Computer Interaction Handbook, edited by Julie A. Jacko and Andrew Sears, 1051–1068. Mahwah, NJ and London: Lawrence Erlbaum Associates.

https://doi.org/10.1201/9781410606723.

National Physiotherapy Advisory Group. 2017. Competency Profile for Physiotherapists in Canada. Accessed 15 February, 2021.

https://www.peac-aepc.ca/pdfs/Resources/Competency%20Profiles/Competency%20Profile%20for%20PTs%202017%20EN.pdf.

Nijboer, Femke, Jens Clausen, Brendan Z. Allison, and Pim Haselager. 2013. “The Asilomar Survey: Stakeholders’ Opinions on Ethical Issues Related to Brain-Computer Interfacing.” Neuroethics 6: 541–578.

https://doi.org/10.1007/s12152-011-9132-6.

Pickersgill, Martyn. 2013. “The Social Life of the Brain: Neuroscience in Society.” Current Sociology 61(3): 322–340.

https://doi.org/10.1177/0011392113476464.

Purcell-Davis, Allyson. 2013. “The Representations of Novel Neurotechnologies in Social Media: Five Case Studies.” The New Bioethics 19(1): 30–45.

https://doi.org/10.1179/2050287713z.00000000026.

Racine, Eric, and John Aspler, eds. 2017. The Debates about Neuroethics: Perspectives on its Development, Focus, and Future. Cham: Springer.

Racine, Eric, and Matthew Sample. 2018. “Two Problematic Foundations of Neuroethics and Pragmatist Reconstructions.” Cambridge Quarterly of Healthcare Ethics 27(4): 566–577.

https://doi.org/10.1017/S0963180118000099.

Rochette, Annie, Eric Racine, Helene Lefebvre, Josee Bastien, et al. 2014. “Actual and Ideal Services in Acute Care and Rehabilitation for Relatives Post-Stroke from Three Perspectives: Relatives, Stroke Clients and Health Professionals.” Journal of Rehabilitation Medicine 46(1): 16-22.

https://doi.org/10.2340/16501977-1228.

Roush, Susan E., and Nancy Sharby. 2011. “Disability Reconsidered: The Paradox of Physical Therapy.” Physical Therapy 91(12): 1715–1727.

https://doi.org/10.2522/ptj.20100389.

Rowe, Gene, and Lynn J. Frewer. 2005. “A Typology of Public Engagement Mechanisms.” Science, Technology, & Human Values 30(2): 251–290.

https://doi.org/10.1177/0162243904271724.

Sample, Matthew, Sebastian Sattler, Stefanie Blain-Moraes, David Rodríguez-Arias, et al. 2019. “Do Publics Share Experts’ Concerns about Brain–Computer Interfaces? A Trinational Survey on the Ethics of Neural Technology.” Science, Technology, & Human Values 45(6): 1242–1270.

https://doi.org/10.1177/0162243919879220.

Sample, Matthew, Wren Boehlen, Sebastian Sattler, Stefanie Blain-Moraes, et al. 2022. “Figure S1: Briefing about BCIs.” Multi-part. Engaging Science, Technology, and Society. STS Infrastructures (Platform for Experimental Collaborative Ethnography).

https://n2t.net/ark:/81416/p4qg6g.

Schicktanz, Silke, Till Amelung, and Jochem W. Rieger. 2015. “Qualitative Assessment of Patients’ Attitudes and Expectations Toward BCIs and Implications for Future Technology Development.” Frontiers in Systems Neuroscience 9: 1–11.

https://doi.org/10.3389/fnsys.2015.00064.

Shakespeare, Tom. 2006. “The Social Model of Disability.” In The Disability Studies Reader, edited by Lennard J. Davis, Second Edition, 197–204. New York, NY: Routledge.

Shamon, Hawal, and Carl C. Berning. 2020. “Attention Check Items and Instructions in Online Surveys with Incentivized and Non-Incentivized Samples: Boon or Bane for Data Quality?” Survey Research Methods 14(1): 55–77.

https://doi.org/10.18148/srm/2020.v14i1.7374.

Shih, Jerry J., Dean J. Krusienski, and Jonathan R. Wolpaw. 2012. “Brain-Computer Interfaces in Medicine.” Mayo Clinic Proceedings 87(3): 268–279.

https://doi.org/10.1016/j.mayocp.2011.12.008.

Stiker, Henri. 1999. A History of Disability. Ann Arbor, MI: University of Michigan Press.

Stilgoe, Jack, Richard Owen, and Phil Macnaghten. 2013. “Developing a Framework for Responsible Innovation.” Research Policy 42(9): 1568–1580.

https://doi.org/10.1016/j.respol.2013.05.008.

Sullivan, Laura S., Eran Klein, Tim Brown, Matthew Sample, et al. 2018. “Keeping Disability in Mind: A Case Study in Implantable Brain–Computer Interface Research.” Science and Engineering Ethics 24(2), 479–504.

Vidal, Fernando. 2009. “Brainhood, Anthropological Figure of Modernity.” History of the Human Sciences 22(1): 5–36.

https://doi.org/10.1177/0952695108099133.

Vidal, Fernando, and Francisco Ortega. 2017. Being Brains: Making the Cerebral Subject. New York, NY: Fordham University Press.

https://doi.org/10.5422/fordham/9780823276073.001.0001.

Winner, Langdon. 1980. “Do Artifacts Have Politics?” Daedalus 109(1): 121–136.

https://www.jstor.org/stable/20024652.

Wolbring, Gregor, and Lucy Diep. 2016. “Cognitive/Neuroenhancement Through an Ability Studies Lens.” In Cognitive Enhancement: Ethical and Policy Implications in International Perspectives, edited by Fabrice Jotterand and Veljko Dubljević, 57–75. New York, NY: Oxford University Press.

https://doi.org/10.1093/acprof:oso/9780199396818.003.0005.

Wolpe, Paul R. 2004. “Neuroethics.” In The Encyclopedia of Bioethics, edited by Stephen G. Post, 1894–1898. New York, NY: MacMillan Reference.

Published
14 Sep 2022
Section
Original Research Articles