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Ethical and Clinical Considerations at the Intersection of Functional Neuroimaging and Disorders of Consciousness: The Experts Weigh In

Abstract:
Abstract:

Recent neuroimaging research on disorders of consciousness provides direct evidence of covert consciousness otherwise not detected clinically in a subset of severely brain-injured patients. These findings have motivated strategic development of binary communication paradigms, from which researchers interpret voluntary modulations in brain activity to glean information about patients’ residual cognitive functions and emotions. The discovery of such responsiveness raises ethical and legal issues concerning the exercise of autonomy and capacity for decisionmaking on matters such as healthcare, involvement in research, and end of life. These advances have generated demands for access to the technology against a complex background of continued scientific advancement, questions about just allocation of healthcare resources, and unresolved legal issues. Interviews with professionals whose work is relevant to patients with disorders of consciousness reveal priorities concerning further basic research, legal and policy issues, and clinical considerations.

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1. Public Health Agency of Canada. Tracking Heart Disease and Stroke in Canada. Ottawa, ON; 2011.

2. National Center for Health Statistics. Health, United States, 2012. Washington, DC: U.S. Department of Health and Human Services; 2013.

3. BernatJL. Chronic disorders of consciousness. Lancet 2006;367(9517):1181–92.

4. GiacinoJT, AshwalS, ChildsNL, CranfordR, JennettB, KatzDI, et al. The minimally conscious state: Definition and diagnostic criteria. Neurology 2002;58(3):349–53.

5. OwenAM, ColemanMR, BolyM, DavisMH, LaureysS, PickardJD. Detecting awareness in the vegetative state. Science 2006;313:1402.

6. MontiMM, VanhaudenhuyseA, ColemanMR, BolyM, PickardJD, TshibandaL, et al. Willful modulation of brain activity in disorders of consciousness. New England Journal of Medicine 2010;362(7):579–89.

7. BardinJC, FinsJJ, KatzDI, HershJ, HeierLA, TabelowK, et al. Dissociations between behavioural and functional magnetic resonance imaging-based evaluations of cognitive function after brain injury. Brain 2011;134:769–82.

8. HampshireA, ParkinBL, CusackR, Fernández-EspejoD, AllansonJ, KamauE, et al. Assessing residual reasoning ability in overtly non-communicative patients using fMRI. NeuroImage: Clinical 2013;2(1):174–83.

9. Fernández-EspejoD, OwenAM. Detecting awareness after severe brain injury. Nature Reviews Neuroscience 2013;14(11):801–9.

10. NaciL, OwenAM. Making every word count for nonresponsive patients. JAMA Neurology 2013:17.

11. See note 9, Fernández-Espejo, Owen 2013.

12. See note 6, Monti et al. 2010.

13. See note 9, Fernández-Espejo, Owen 2013.

14. See note 10, Naci, Owen 2013.

15. See note 6, Monti et al. 2010.

16. See note 9, Fernández-Espejo, Owen 2013.

17. See note 10, Naci, Owen 2013.

18. See note 9, Fernández-Espejo, Owen 2013.

19. NaciL, CusackR, AnelloM, OwenAM. A common neural code for similar conscious experiences in different individuals. Proceedings of the National Academy of Sciences 2014:16.

20. See note 8, Hampshire et al. 2013.

21. WilkinsonDJ, SavulescuJ. Is it better to be minimally conscious than vegetative? Journal of Medical Ethics 2012;1:13.

22. ChanTK, TipoeGL. Should we continue treatment for M? The benefits of living. Journal of Medical Ethics 2014;40:131–3.

23. WilkinsonDJ, KahaneG, SavulescuJ. “Neglected personhood” and neglected questions: Remarks on the moral significance of consciousness. American Journal of Bioethics Neuroscience 2008;8(9):31–3.

24. KahaneG, SavulescuJ. Brain damage and the moral significance of consciousness. Journal of Medical Philosophy 2009 Feb;34(1):626.

25. FinsJJ. Being conscious of their burden: Severe brain injury and the two cultures challenge. Annals of the New York Academy of Science 2009;1157:131–47.

26. FinsJJ, SuppesA. Brain injury and the culture of neglect: Musings on an uncertain future. Social Research 2011;78(3):731–46.

27. Somerville MA. Consent to Medical Care. Ottawa, ON; 1980.

28. FadenRR, BeauchampTL, KingNM. A History and Theory of Informed Consent. New York: Oxford University Press; 1986.

29. AppelbaumPS. Assessment of patients’ competence to consent to treatment. New England Journal of Medicine 2007;357:1834–40.

30. See note 7, Bardin et al. 2011.

31. PetersonA, NaciL, WeijerC, CruseD, Fernández-EspejoD, GrahamM, et al. Assessing decision making capacity in the behaviorally non-responsive patient with residual covert awareness. American Journal of Bioethics Neuroscience 2013;4(3):314.

32. United Nations. Convention on the Rights of Persons with Disabilities; 2007.

33. United Nations. Convention on the Rights of Persons with Disabilities: Declarations and reservations. In: Treaty Series vol2515. New York: United Nations; 2008.

34. BachM. Supported decision making under Article 12 of the UN Convention on the Rights of Persons with Disabilities: Questions and challenges. In: Conference on Legal Capacity and Supported Decision Making. Athlone, Ireland; 2007:117.

35. KulynychJ. Legal and ethical issues in neuroimaging research: Human subjects protection, medical privacy, and the public communication of research results. Brain and Cognition 2002;50:345–57.

36. WinsladeWJ. Severe brain injury: Recognizing the limits of treatment and exploring the frontiers of research. Cambridge Quarterly of Healthcare Ethics 2007;16:161–8.

37. TovinoS. Neuroimaging research into disorders of consciousness: Moral imperative or ethical and legal failure? Virginia Journal of Law and Technology 2008;13(2):153.

38. AnnasGJ. Foreword: Imagining a new era of neuroimaging, neuroethics, and neurolaw. American Journal of Law and Medicine 2007;33(2–3):163–70.

39. FinsJJ, IllesJ, BernatJL, HirschJ, LaureysS, MurphyE. Neuroimaging and disorders of consciousness: Envisioning an ethical research agenda. American Journal of Bioethics Neuroscience 2008;8(9):312.

40. WilkinsonDJ, KahaneG, HorneM, SavulescuJ. Functional neuroimaging and withdrawal of life-sustaining treatment from vegetative patients. Journal of Medical Ethics 2009 Aug;35(8):508–11.

41. BendtsenK. Communicating with the minimally conscious: Ethical implications in end-of-life care. American Journal of Bioethics Neuroscience 2013;4(1):4651.

42. GlannonW. Prognosis matters, not diagnosis. American Journal of Bioethics Neuroscience 2013;4(4):34–5.

43. FinsJJ. Rights Come to Mind: Brain Injury, Ethics, and the Struggle for Consciousness. New York: Cambridge University Press; 2015.

44. LeeG, ByramAC, OwenAM, RibaryU, StoesslAJ, TownsonA, et al. Canadian perspectives on the clinical actionability of neuroimaging in disorders of consciousness. Canadian Journal of Neurological Sciences 2015;42:96105.

45. Charmaz K. Constructing Grounded Theory. 1st ed. Thousand Oaks, CA: Sage; 2006.

46. The Pareto principle (or law of the vital few, as it is sometimes termed) observes that roughly 80% of the effects come from 20% of the causes across a wide spectrum of phenomena from language to economics and the social sciences. Newman MEJ. Power laws, Pareto distributions and Zipf’s law. Contemporary Physics 2005;46(5):323–51.

47. See note 28, Faden et al. 1986, at 277.

48. SimpsonC. Decision-making capacity and informed consent to participate in research by cognitively impaired individuals. Applied Nursing Research 2010;23(4):221–6.

49. PetriniC. Informed consent in experimentation involving mentally impaired persons: Ethical issues. Annali dell’Istituto Superiore di Sanità 2010;46(4):411–21.

50. Bach M, Kerzner L. A New Paradigm for Protecting Autonomy and the Right to Legal Capacity. Toronto: Law Commission of Ontario; 2010, at 86.

51. D.C. Cir. Frye v. United States. 1923.

52. ThompsonWC. Evaluating the admissibility of new genetic identification tests: Lessons from the “DNA War.” Journal of Law and Criminology 1993;84(1):22104.

53. RodrigueC, RiopelleRJ, BernatJL, RacineE. Perspectives and experience of healthcare professionals on diagnosis, prognosis, and end-of-life decision making in patients with disorders of consciousness. Neuroethics 2013;6(1):2536.

54. RacineE, DionM-J, WijmanCAC, IllesJ, LansbergMG. Profiles of neurological outcome prediction among intensivists. Neurocritical Care 2009;11(3):345–52.

Conflict of interest: GL, ACB, UR, AJS, and AT have nothing to disclose. AMO received research support from a Canada Excellence Research Chairs grant, Canadian Institutes of Health Research (CIHR) grant, Canada Foundation for Innovation grant, National Sciences and Engineering Research Council (NSERC) Discovery grant, James S. McDonnell Foundation grant, and NSERC Research Tools and Instruments grant. JI received support from the University of British Columbia, CIHR grant: EOG #120257 and CNE #85117. JI and AMO both hold grant support on the topic of neuroimaging and disorders of consciousness from the CIHR.

We thank the experts who contributed their time and insight to this study. This study was supported by the Canadian Institutes of Health Research: EOG #120257 and CNE #85117. AMO received research support from a Canada Excellence Research Chairs grant, Canadian Institutes of Health Research (CIHR) grant, Canada Foundation for Innovation grant, National Sciences and Engineering Research Council (NSERC) Discovery grant, James S. McDonnell Foundation grant, and NSERC Research Tools and Instruments grant. UR received research support from BC LEEF (Leading Edge Endowment Fund) and a Canada Foundation for Innovation (CFI) and Operating (CFI-IOF) grant.

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Cambridge Quarterly of Healthcare Ethics
  • ISSN: 0963-1801
  • EISSN: 1469-2147
  • URL: /core/journals/cambridge-quarterly-of-healthcare-ethics
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