Hostname: page-component-78c5997874-dh8gc Total loading time: 0 Render date: 2024-11-11T02:45:19.189Z Has data issue: false hasContentIssue false
  • English
  • Français

Trading Vulnerabilities: Living with Parkinson’s Disease before and after Deep Brain Stimulation

Published online by Cambridge University Press:  27 October 2021

Sara Goering ,
Anna Wexler  and
Eran Klein
Sara Goering*
Affiliation:
Department of Philosophy and Center for Neurotechnology University of Washington, Seattle, WA, USA
Anna Wexler
Affiliation:
Department of Medical Ethics and Health Policy University of Pennsylvania, Philadelphia, PA, USA
Eran Klein
Affiliation:
Department of Philosophy and Center for Neurotechnology University of Washington, Seattle, WA, USA Department of Neurology Oregon Health & Science University, Portland, OR, USA
*
*Corresponding author. Email: sgoering@uw.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Implanted medical devices—for example, cardiac defibrillators, deep brain stimulators, and insulin pumps—offer users the possibility of regaining some control over an increasingly unruly body, the opportunity to become part “cyborg” in service of addressing pressing health needs. We recognize the value and effectiveness of such devices, but call attention to what may be less clear to potential users—that their vulnerabilities may not entirely disappear but instead shift. We explore the kinds of shifting vulnerabilities experienced by people with Parkinson’s disease (PD) who receive therapeutic deep brain stimulators to help control their tremors and other symptoms of PD.

Keywords

Parkinson’s diseasedeep brain stimulationimplanted medical devicescyborgvulnerability
Type
Articles
Information
Cambridge Quarterly of Healthcare Ethics , Volume 30 , Issue 4 , October 2021 , pp. 623 - 630
Copyright
© The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Notes

1. Oudshoorn, N. The vulnerability of cyborgs: The case of ICD shocks. Science, Technology, & Human Values 2016;41(5):767–92CrossRefGoogle Scholar.

2. Kubu, C, Cooper, S, Machado, A, Frazier, T, Vitek, J, Ford, P. Insights gleaned by measuring patients’ stated goals for DBS: More than tremor. Neurology 2017;88(2):124–30CrossRefGoogle ScholarPubMed.

3. Mackenzie, C, Rogers, W, Dodds, S. Introduction: What is vulnerability and why does it matter for moral theory? In Mackenzie, C, Rogers, W, Dodds, S, eds. Vulnerability: New Essays in Ethics and Feminist Philosophy. New York: Oxford University Press; 2014, at 1–32 Google Scholar.

4. Coeckelbergh, M. The art of living with ICTs: The ethics-aesthetics of vulnerability coping and its implications for understanding and evaluating ICT cultures. Foundations of Science 2015; 22(2):339–48CrossRefGoogle Scholar.

5. Standefer, K. Lightning Flowers. New York: Little, Brown Spark/Hackett; 2020 Google Scholar.

6. See note 5, Standefer 2020, at 142.

7. See note 1, Oudshoorn 2016, at 770.

8. See note 4, Coeckelbergh 2015.

9. For details, see Wexler A, Goering S, Klein E. Ethical issues in intraoperative neuroscience research: Assessing subjects’ recall of informed consent and motivations for participation. AJOB Empirical Bioethics 2021; doi: 10.1080/23294515.2021.1941415.

10. See note 2, Kubu et al. 2017.

11. Hariz, GM, Limousin, P, Tisch, S, Jahanshahi, M, Fjellman‐Wiklund, A. Patients’ perceptions of life shift after deep brain stimulation for primary dystonia—A qualitative study. Movement Disorders 2011;26(11):2101–6CrossRefGoogle ScholarPubMed.

12. All but two of the participants were interviewed postoperatively; two declined to participate in the second interview.

13. In some of the postsurgery interviews, interviewees reflected back on their presurgical experience. The “pre” and “post” labels attach to the timing of the interview, pre- or postsurgery.

14. Bell, E, Maxwell, E, McAndrews, M, Sadikot, A, Racine, E. Hope and patients’ expectations in deep brain stimulation: Healthcare providers’ perspectives and approaches. Journal of Clinical Ethics 2010;21(2):112–24Google ScholarPubMed.

15. Halpern, J, Paolo D, Huang, A. Informed consent for early phase clinical trials: The therapeutic misestimation, unrealistic optimism, and appreciation. Journal of Medical Ethics 2019;45:384–7CrossRefGoogle ScholarPubMed.

16. Pringsheim, T, Jette, N, Frolkis, A, Steeves, TDL. The prevalence of Parkinson’s disease: A systematic review and meta-analysis. Movement Disorders 2014;29:1583–90CrossRefGoogle ScholarPubMed.

17. Ma, HI, Saint-Hilaire, M, Thomas, CA, Tickle-Degnen, L. Stigma as a key determinant of health-related quality of life in Parkinson’s disease. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation 2016;25(12):3037–45CrossRefGoogle ScholarPubMed.

18. Gardner, J. A history of deep brain stimulation: Technological innovation and the role of clinical assessment tools. Social Studies of Science 2013;43(5):707–28; at 708CrossRefGoogle Scholar.

19. Abbott Labs. “What to Expect from DBS Therapy” 2020. Available at https://www.neuromodulation.abbott/us/en/movement-disorders/living-with-dbs-therapy/what-to-expect.html (last accessed 1 Dec 2021).

20. Gardner, J, Warren, N, Addison, C, Samuel, G. Persuasive bodies: Testimonies of deep brain stimulation and Parkinson’s on YouTube. Social Science & Medicine 2019;222:44–51 CrossRefGoogle ScholarPubMed.

21. Marcuccilli, L, Casida, JM. From insiders’ perspectives: Adjusting to caregiving for patients with left ventricular assist devices. Progress in Transplantation 2011;21(2):137–43CrossRefGoogle ScholarPubMed.

22. Schermer, M. The cyborg-fear: How conceptual dualisms shape our self-understanding. AJOB Neuroscience 2014;5(4):56–7CrossRefGoogle Scholar.

23. Klein, E, Goering, S, Gagne, J, Shea, C, Franklin, R, Zorowitz, S, Dougherty, D, et al. Brain–computer interface-based control of closed-loop brain stimulation: Attitudes and ethical considerations. Brain–Computer Interfaces 2016;3(3):140–8.CrossRefGoogle Scholar

24. See note 23, Klein et al. 2016, at 4.

25. Kittay, E. Love’s Labor: Essays on Women, Equality and Dependency. New York: Routledge; 1999 Google Scholar.

26. Glannon, W. Consent to deep brain stimulation for neurological and psychiatric disorders. The Journal of Clinical Ethics 2010;21(2):104–11Google ScholarPubMed.

27. Mandarelli, G, Moretti, G, Pasquini, M, Nicolò, G, Ferracuti, S. Informed consent decision-making in deep brain stimulation. Brain Sciences 2018;8(5):84 CrossRefGoogle ScholarPubMed.

28. Bell E, Racine E, Chiasson P, Dufourcq-Brana M, Dunn L, Fins J, Ford P, Glannon W, Lipsman N, Macdonald M, Matthews D and McAndrews M. Beyond Consent in Research: Revisiting Vulnerability in Deep Brain Stimulation for Psychiatric Disorders. Cambridge Quarterly of Healthcare Ethics 2014;23(3), 361–368. doi:10.1017/S0963180113000984 CrossRefGoogle Scholar

29. Thomson, CJ, Segrave, RA, Racine, E, Warren, N, Thyagarajan, D, Carter, A. ‘He’s back so I’m not alone’: The impact of deep brain stimulation on personality, self, and relationships in Parkinson’s Disease. Qualitative Health Research 2020;30(14):2217–33CrossRefGoogle Scholar.

30. Agid, Y. Commentary: Dealing with the aftermath. Cambridge Quarterly of Healthcare Ethics 2016;25(4):750–1CrossRefGoogle ScholarPubMed.

31. Kubu, C, Ford, P. Clinical ethics in the context of deep brain stimulation for movement disorders. Archives of Clinical Neuropsychology 2017;32(7):829–39CrossRefGoogle ScholarPubMed.

32. See note 4, Coeckelbergh 2015.

33. Hariz GM, Limousin P, & Hamberg K. “DBS means everything - for some time.” Patients’ Perspectives on Daily Life with Deep Brain Stimulation for Parkinson’s Disease. Journal of Parkinson’s disease 2016;6(2), 335–347. https://doi.org/10.3233/JPD-160799 CrossRefGoogle Scholar

34. See note 4, Coeckelbergh 2015, at 341.