Abstract
One important concern regarding implantable Brain Computer Interfaces (BCI) is the fear that the intervention will negatively change a patient’s sense of identity or agency. In particular, there is concern that the user will be psychologically worse-off following treatment despite postoperative functional improvements. Clinical observations from similar implantable brain technologies, such as deep brain stimulation (DBS), show a small but significant proportion of patients report feelings of strangeness or difficulty adjusting to a new concept of themselves characterized by a maladaptive je ne sais quoi despite clear motor improvement. Despite the growing number of cases in the DBS literature, there is currently no accepted or standardized tool in neuroethics specifically designed to capture the phenomenological postoperative experience of patients implanted with DBS or BCI devices. Given potential risks of postoperative maladaptation, it is important for the field of neuroethics to develop a qualitative instrument that can serve as a shared method for capturing postoperative variations in patient experience of identity and agency. The goal of this article is to introduce an instrument we have developed for this purpose and call for further neuroethical efforts to assess the phenomenology of implantable brain device use.
References
Pereira, E.A., et al. 2007. Deep brain stimulation: Indications and evidence. Expert Rev Med Devices 4 (5): 591–603.
Christen, M., C. Ineichen, M. Bittlinger, H.W. Bothe, and S. Müller. 2014. Ethical focal points in the international practice of deep brain stimulation. AJOB Neuroscience 5: 65–80. https://doi.org/10.1080/21507740.2014.939380.
Gilbert, F., Deep Brain Stimulation and Postoperative Suicidability Among Treatment Resistant Depression Patients: Should Eligibility Protocols Exclude Patients with History of Suicide Attempts and Anger/Impulsivity? American Journal of Bioethics: Neuroscience. 2013. 4 (1): 28-35. https://doi.org/10.1080/21507740.2012.740143
Gilbert, F., J.M.N. Viaña, and C. Ineichen. 2018. Deflating the “DBS causes personality changes” bubble. Neuroethics. https://doi.org/10.1007/s12152-018-9373-8.
Bluhm, R., and L.Y. Cabrera. 2018. It’s not just counting that counts: A reply to Gilbert, Viaña, and Ineichen. Neuroethics. https://doi.org/10.1007/s12152-018-9391-6.
Erler, A. 2019. Discussions of DBS in neuroethics: Can we deflate the bubble without deflating ethics? Neuroethics. https://doi.org/10.1007/s12152-019-09412-9.
Gaillard, M. 2019. Neuroessentialism, our technological future, and DBS bubbles. Neuroethics. https://doi.org/10.1007/s12152-019-09407-6.
Zuk, Peter, Amy L. McGuire, and Gabriel Lázaro-Muñoz. 2018. Alienation, quality of life, and DBS for depression. AJOB Neuroscience 9 (4): 223–225. https://doi.org/10.1080/21507740.2018.1561543.
Snoek, A., S. de Haan, and M. Schermer et al. 2019. On the significance of the identity debate in DBS and the need of an inclusive research agenda. A reply to Gilbert, Viana and Ineichen. Neuroethics. https://doi.org/10.1007/s12152-019-09411-w
Zuk, P., L. Torgerson, D. Sierra-Mercado, and G. Lázaro-Muñoz. 2018. Neuroethics of neuromodulation: An update. Current Opinion in Biomedical Engineering 8: 45–50. https://doi.org/10.1016/j.cobme.2018.10.003.
Pugh, J., Pycroft, L., Maslen, H. et al. Evidence-Based Neuroethics, Deep Brain Stimulation and Personality-Deflating, but not Bursting, the Bubble Neuroethics (2018). https://doi.org/10.1007/s12152-018-9392-5
Kubu, CS., PJ Ford, JA Wilt, et al. Pragmatism and the Importance of Interdisciplinary Teams in Investigating Personality Changes Following DBS. Neuroethics, 2019. https://doi.org/10.1007/s12152-019-09418-3
Gilbert, F. 2012. The burden of normality: From ‘chronically ill’ to ‘symptom free’. New ethical challenges for deep brain stimulation postoperative treatment. Journal of Medical Ethics. 38: 408–412. https://doi.org/10.1136/medethics-2011-100044.
Baertschi, M., J. Flores Alves Dos Santos, P. Burkhard, K. Weber, A. Canuto, and N. Favez. 2019. The burden of normality as a model of psychosocial adjustment after deep brain stimulation for Parkinson’s disease: A systematic investigation. Neuropsychology 33 (2): 178–194.
Gilbert, F., and J.M.N. Viaña. 2018. A personal narrative on living and dealing with psychiatric symptoms after DBS surgery. Narrative Inquiry in Bioethics. 8 (1): 67–78.
Ineichen, C., H. BaumannVogel, and M. Christen. 2016. Deep brain stimulation: In search of reliable instruments for assessing complex personality related changes. Brain Sciences 6 (3): 40.
Bittlinger, M. 2017. The patient’s voice in DBS research: Advancing the discussion through methodological rigor. AJOB Neuroscience 8 (2): 118–120.
Gilbert, Frederic. 2015. A threat to autonomy? The intrusion of predictive brain implants. AJOB Neuroscience 6 (4): 411. https://doi.org/10.1080/21507740.2015.1076087.
Gilbert, F., T. O'Brien, and M. Cook. 2018. The effects of closed-loop brain implants on autonomy and deliberation: What are the risks of being kept in the loop? Cambridge Quarterly of Healthcare Ethics (Neuroethics Now) 27 (2): 316–325.
Gilbert, F., M. Cook, T. O'Brien, and J. Illes. 2019. Embodiment and estrangement: Results from a first-in-human “intelligent brain computer interface” trial. Science and Engineering Ethics. 25 (1): 83–96. https://doi.org/10.1007/s11948-017-0001-5.
Focquaert F., and D. DeRidder. 2009. Direct intervention in the brain: Ethical issues concerning personal identity. JEMH 4(2).
Glannon. 2009. Stimulating brains, altering minds. Journal of Medical Ethics 35 (5).
Klaming, Laura, and Pim Haselager. 2013. Did my brain implant make me do it? Questions raised by DBS regarding psychological continuity, responsibility for action and mental competence. Neuroethics 6 (3): 527539.
Witt, K., J. Kuhn, L. Timmermann, M. Zurowski, and C. Woopen. 2013. Deep brain stimulation and the search for identity. Neuroethics 6 (3): 499–511.
Dings, Roy, and Leon de Bruin. 2016. Situating the self: Understanding the effects of deep brain stimulation. Phenomenology and the Cognitive Sciences 15 (2): 151165.
Baylis, F. 2013. “I am who I am”: On the perceived threats to personal identity from deep brain stimulation. Neuroethics. 6 (3): 513–526.
Mackenzie, C., and M. Walker. 2015. Neurotechnologies, personal identity, and the ethics of authenticity. In Handbook of neuroethics, ed. J. Clausen and N. Levy, 373392. Dordrecht: Springer Netherlands. https://doi.org/10.1007/9789400747074_10.
Brown, Timothy, Margaret C. Thompson, Jeffrey Herron, Andrew Ko, Howard Chizeck, and Sara Goering. Controlling our brains – a case study on the implications of brain-computer interface-triggered deep brain stimulation for essential tremor. Brain-Computer Interfaces.
de Haan Sanneke, Erik Rietveld, Martin Stokhof, and Damiaan Denys. 2013. The phenomenology of deep brain stimulationinduced changes in OCD: An enactive affordance based model. Frontiers in Human Neuroscience 7.
Gilbert, F. 2015. Self-estrangement & deep brain stimulation: Ethical issues related to forced explantation. Neuroethics. 8 (2): 107114. https://doi.org/10.1007/s1215201492241.
Mecacci, Giulio, and W.F.G. Haselager. 2014. Stimulating the self: The influence of conceptual frameworks on reactions to deep brain stimulation. AJOB Neuroscience 5 (4): 3039.
Johansson, V., M. Garwicz, M. Kanje, et al. 2011. Authenticity, depression, and deep brain stimulation. Frontiers in Integrative Neuroscience 5: 21.
Maslen, Hannah, Jonathan Pugh, and Julian Savulescu. 2015. The ethics of deep brain stimulation for the treatment of anorexia nervosa. Neuroethics 8 (3): 215230.
Nyholm, and O’Neill. 2016. Deep brain stimulation, continuity over time, and the true self. Cambridge Quarterly of Healthcare Ethics 25 (4) (Clinical Neuroethics)): 647–658.
Temel, Y., A. Kessels, S. Tan, A. Topdag, P. Boon, and V. Visser Vandewalle. 2006. Behavioural changes after bilateral subthalamic stimulation in advanced Parkinson disease: A systematic review. Parkinsonism & Related Disorders 12 (5): 265–272.
Sholl, J. 2015. Putting phenomenology in its place: Some limits of a phenomenology of medicine. Theoretical Medicine and Bioethics 36: 391–410. https://doi.org/10.1007/s11017-015-9345-5.
Schüpbach, M., M. Gargiulo, M.L. Welter, et al. 2006. Neurosurgery in Parkinson disease: A distressed mind in a repaired body? Neurology 66: 1811–1816.
Houeto, et al. 2002. Behavioural disorders, Parkinson’s disease and subthalamic stimulation. Journal of Neurology, Neurosurgery, and Psychiatry 71 (6): 701–707.
Agid, Y., M. Schüpbach, M. Gargiulo, et al. 2006. Neurosurgery in Parkinson’s disease: The doctor is happy, the patient less so? Journal of Neural Transmission 70: 400–414.
Gisquet, E. 2008. Cerebral implants and Parkinson’s disease: A unique form of biographical disruption? Social Science & Medicine 67: 1847–1851.
de Haan, S., E. Rietveld, M. Stokhof, and D. Denys. 2015. Effects of deep brain stimulation on the lived experience of obsessive compulsive disorder patients: Indepth interviews with 18 patients. PLoS One 10 (8): e0135524.
Hariz, et al. 2011. Patients’ perceptions of life shift after deep brain stimulation for primary dystonia A qualitative study. Movement Disorders 26 (11): 2101–2106.
Lewis, C.J., F. Maier, N. Horstkötter, A. Zywczok, K. Witt, C. Eggers, T.D. Meyer, T.A. Dembek, M. Maarouf, E. Moro, M. Zurowski, C. Woopen, J. Kuhn, and L. Timmermann. 2015. Subjectively perceived personality and mood changes associated with subthalamic stimulation in patients with Parkinson’s disease. Psychological Medicine 45 (01): 7385.
Pham, U., et al. 2015. Personality changes after deep brain stimulation in Parkinson’s disease. Parkinson’s Disease 2015: 490507, 7 pages. https://doi.org/10.1155/2015/490507.
Gilbert, F., and P. Tubig. 2018. Cognitive enhancement with brain implants: The burden of abnormality. J Cogn Enhanc 2 (4): 364–368. https://doi.org/10.1007/s41465-018-0105-0.
Steinert et al. 2018. Doing things with thoughts: Brain-computer interfaces and disembodied agency. Philosophy & Technology. https://doi.org/10.1007/s13347-018-0308-4.
Kellmeyer, Philipp, Thomas Cochrane, Oliver Müller, Christine Mitchell, Tonio Ball, Joseph J. Fins, and Nikola Billerandorno. 2016. The effects of closed loop medical devices on the autonomy and accountability of persons and systems. Cambridge Quarterly of Healthcare Ethics 25 (04): 623633.
Klein, E., S. Goering, J. Gagne, C.V. Shea, R. Franklin, S. Zorowitz, D.D. Dougherty, and A.S. Widge. 2016. Brain-computer interface-based control of closed-loop brain stimulation: Attitudes and ethical considerations. Brain-Computer Interfaces 3 (3): 1–9.
Klein, K., T. Brown, M. Sample, A.R. Truitt, and S. Goering. 2015. Engineering the brain: Ethical issues and the introduction of neural devices. Hastings Center Report 45 (6): 26–35. https://doi.org/10.1002/hast.515.
Gilbert, F., Cook, M., Are Predictive Brain Implants an Indispensable Feature of Autonomy?, Bioethica Forum. 2015. 8 (4): 121–127
Shaw, Virginia Eatough Karen. 2017. ‘I’m worried about getting water in the holes in my head’: A phenomenological psychology case study of the experience of undergoing deep brain stimulation surgery for Parkinson’s disease. British Journal of Health Psychology 22: 94–109. https://doi.org/10.1111/bjhp.12219.
Gilbert, F., E. Goddard, J.M.N. Viaña, A. Carter, and M. Horne. 2017. “I miss being me”: Phenomenological effects of deep brain stimulation. American Journal of Bioethics Neuroscience 8 (2): 96–109. https://doi.org/10.1080/21507740.2017.1320319.
Gilbert, F. 2018. Deep brain stimulation: Inducing self-estrangement. Neuroethics 11: 157. https://doi.org/10.1007/s12152-017-9334-7.
Thomson, Cassandra, and Rebecca Segrave. 2017. “I miss you too”: More voices needed to examine the phenomenological effects of deep brain stimulation. AJOB Neuroscience 8 (2): 122–123.
Haahr, A., M. Kirkevold, E.O. Hall, and K. Ostergaard. 2013. ‘Being in it together’: Living with a partner receiving deep brain stimulation for advanced Parkinson's disease—a hermeneutic phenomenological study. Journal of Advanced Nursing 69 (2): 338–347. https://doi.org/10.1111/j.1365-2648.2012.06012.x.
Smith, J., P. Flowers, and M. Larkin. 2009. Interpretative phenomenological analysis: Theory, method and research. In London: SAGE. https://doi.org/10.1007/s12152-018-9392-5.
Shahmoon et al The Lived Experiences of Deep Brain Stimulation in Parkinson’s Disease: An Interpretative Phenomenological Analysis Parkinson’s Disease Volume 2019, Article ID 1937235, 7 pages https://doi.org/10.1155/2019/1937235
F Gilbert, C Pham, Jnm Viaña & W. Gillam (2019) Increasing brain-computer interface media depictions: pressing ethical concerns, Brain-Computer Interfaces, https://doi.org/10.1080/2326263X.2019.1655837
Gardner, J., N Warren, Addison C. et al Persuasive bodies: Testimonies of deep brain stimulation and Parkinson's on YouTube. Social Science & Medicine. 2019. 222:44–51.
Nakada H, YoshidaS, Muto K. “Tell me what you suggest, and let’s do that, doctor”:Patient deliberation time during informal decision-making in clinicaltrials. PLoS ONE. 2019;14(1):e0211338
Acknowledgments
This work was supported by grants from the Australian Research Council (DECRA award Project Number DE150101390), the National Science Foundation (NSF Award #EEC-1028725) and the University of Tasmania, CALE Hothouse (Exploring the interfaces: patient experiences with brain-computer interface devices for neurologic and psychiatric conditions).
Author information
Authors and Affiliations
Corresponding author
Additional information
NIH.com NIH announces awards for BRAIN Initiative neuroethics research https://www.nih.gov/news-events/news-releases/nih-announces-awards-brain-initiative-neuroethics-research Last retrieved June 05 2018.
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Appendix: Instrument Pilot
Based on qualitative instrument entitled “Semi-structured Interview Script” in [20, 52]. Our team conducted further literature review, and reworked some of the questions accordingly.
Appendix: Instrument Pilot
These are examples of generic questions. They are an indication of the themes to be explored (A-E) during the interviews, rather than the exact questions to be asked to patients. The choice of words, terminology or languages may change slightly for each patient*.
-
A.
General questions about life pre-op.
-
Please tell me about when you first find out about your condition. What was going on at the time? What did you come to learn about your condition and your options for treatments? How did it impact your life?
-
What therapies have you tried? How did you respond to them?
-
How and where did you find out about this device?
-
What questions did you ask? What did you want to know before you were ready to say yes?
-
What is your understanding about how the device will work?
-
What factors did you consider before deciding to go through the procedure?
-
-
B.
General questions about life post-op and device use and efficacy.
-
What was it like to undergo surgery?
-
How would you describe the process of learning to use the device? (Was it fun, difficult, frustrating, challenging but rewarding, etc.?)
-
What kinds of training were part of that process? How long did it take?
-
Can you describe what it feels like to use the device? (Is it fun, difficult, frustrating, challenging but rewarding, etc.?)
-
In what ways has the device been helpful (or effective)? In what ways has it fallen short?
-
What types of side-effects do you experience from using the device?
-
What worries you about your device? What do you do to deal with these worries?
-
In what ways do you feel you have been changed by the device? How do you perceive those changes, for example, for better or for worse?
-
How has the device met your expectations? In what ways has it not met your expectations? How important is it to you that these expectations were met or not met? Why?
-
What else do you want to know about how your device works? Now that you’ve experienced it, what do you know now that you wished you’d known before you got your device?
-
-
C.
Questions regarding postoperative sense of the self.
-
How does your implant affect how you feel? Do you perceive yourself differently now vs. before your implant? That is, do you ever feel that your moods, personality, thoughts, or behaviors have changed because of your device? If so, what kinds of differences do you feel?
-
Have others noticed any changes in you (e.g., habits, daily activities, personality, etc.) that have occurred as a result of using the device? If so, what’s that like? Can you describe an example? What do those changes mean to you in terms of how you see yourself now?
-
What are your thoughts about who you are or will be in the future with this device? What hopes and/or worries do you have about how this device might change you in the future in ways you wouldn’t have changed without the device? What is behind these hopes and worries?
-
-
D.
Questions regarding postoperative sense of agency.
-
Can you tell me about a time, if you’ve experienced it, when you felt that your actions were influenced by your device or that your actions were coming more from your device than from you? What was going on? What was that like? When did you realize that it had happened? In the moment? Later upon reflection?
-
In what ways did that experience make you feel like your actions were in some way not quite your own because of your device? Can you tell me about other times when you felt like your actions were more your own when you used your device?
-
Describe a time when felt like you had to “work with” or “work around” your device. What did you notice about it? How did that affect your sense of self?
-
What kinds of questions have your family or friends asked about your device? Have they commented on your ability to do something (or not do something) because of your device? What was going on when they made those comments? How has the device affected your relationships or trust with them?
-
-
E.
Questions regarding postoperative sense of control.
-
Prior to receiving your device, how much control did you have over habits, daily life activities, your symptoms? In what ways?
-
How has your device made you less dependent on others? How has it made you feel more dependent on others? Please give examples of times when you’ve noticed a change in either/both ways.
-
Have others told you that you have better control over your yourself, your symptoms, or your life in general? If so, do you agree with them? If not, why not?
-
-
F.
Questions regarding postoperative sense of embodiment
-
Can you talk about how you have integrated the device as part of your body? In what ways does it feel like it’s part of you and/or separate from you? Can you explain why you feel this way?
-
Some people have described the device like a tool you use to accomplish something and then stop using. Others talk about it like something that is part of you that you don’t turn on and off. What has been your experience? What do you attribute that experience to? Can you describe why you feel this way?
-
When the device doesn’t work the way you want it to, what happens? How do you explain the difference in expectations and performance? If you attribute blame to the malfunction, do you tend toward it being because of the device, yourself or something/someone else? Can you give an example?
-
How has your experience in this research project affected how you “trust” (for example, trust yourself, trust others, trust technology)? Can you give (an) example(s)?
-
* Family or caregiver, when possible, should also be questioned regarding whether they noticed potential postoperative self-changes.
Rights and permissions
About this article
Cite this article
Gilbert, F., Brown, Dasgupta et al. An Instrument to Capture the Phenomenology of Implantable Brain Device Use. Neuroethics 14 (Suppl 3), 333–340 (2021). https://doi.org/10.1007/s12152-019-09422-7
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12152-019-09422-7