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Ethical and Clinical Considerations at the Intersection of Functional Neuroimaging and Disorders of Consciousness

The Experts Weigh In

Published online by Cambridge University Press:  16 September 2016

ADRIAN C. BYRAM ,
GRACE LEE ,
ADRIAN M. OWEN ,
URS RIBARY ,
A. JON STOESSL ,
ANDREA TOWNSON  and
JUDY ILLES
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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.

Keywords

brain injurycovert consciousnessinformed consentlegal capacityneuroethicsneuroimaging
Type
Articles
Information
Cambridge Quarterly of Healthcare Ethics , Volume 25 , Special Issue 4: Clinical Neuroethics , October 2016 , pp. 613 - 622
Copyright
Copyright © Cambridge University Press 2016 

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References

Notes

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. Bernat, JL. Chronic disorders of consciousness. Lancet 2006;367(9517):1181–92.CrossRefGoogle ScholarPubMed

4. Giacino, JT, Ashwal, S, Childs, NL, Cranford, R, Jennett, B, Katz, DI, et al. The minimally conscious state: Definition and diagnostic criteria. Neurology 2002;58(3):349–53.CrossRefGoogle ScholarPubMed

5. Owen, AM, Coleman, MR, Boly, M, Davis, MH, Laureys, S, Pickard, JD. Detecting awareness in the vegetative state. Science 2006;313:1402.CrossRefGoogle ScholarPubMed

6. Monti, MM, Vanhaudenhuyse, A, Coleman, MR, Boly, M, Pickard, JD, Tshibanda, L, et al. Willful modulation of brain activity in disorders of consciousness. New England Journal of Medicine 2010;362(7):579–89.CrossRefGoogle ScholarPubMed

7. Bardin, JC, Fins, JJ, Katz, DI, Hersh, J, Heier, LA, Tabelow, K, et al. Dissociations between behavioural and functional magnetic resonance imaging-based evaluations of cognitive function after brain injury. Brain 2011;134:769–82.CrossRefGoogle ScholarPubMed

8. Hampshire, A, Parkin, BL, Cusack, R, Fernández-Espejo, D, Allanson, J, Kamau, E, et al. Assessing residual reasoning ability in overtly non-communicative patients using fMRI. NeuroImage: Clinical 2013;2(1):174–83.CrossRefGoogle ScholarPubMed

9. Fernández-Espejo, D, Owen, AM. Detecting awareness after severe brain injury. Nature Reviews Neuroscience 2013;14(11):801–9.CrossRefGoogle ScholarPubMed

10. Naci, L, Owen, AM. Making every word count for nonresponsive patients. JAMA Neurology 2013:1–7.Google ScholarPubMed

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. Naci, L, Cusack, R, Anello, M, Owen, AM. A common neural code for similar conscious experiences in different individuals. Proceedings of the National Academy of Sciences 2014:1–6.Google ScholarPubMed

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

21. Wilkinson, DJ, Savulescu, J. Is it better to be minimally conscious than vegetative? Journal of Medical Ethics 2012;1:1–3.Google Scholar

22. Chan, TK, Tipoe, GL. Should we continue treatment for M? The benefits of living. Journal of Medical Ethics 2014;40:131–3.CrossRefGoogle Scholar

23. Wilkinson, DJ, Kahane, G, Savulescu, J. “Neglected personhood” and neglected questions: Remarks on the moral significance of consciousness. American Journal of Bioethics Neuroscience 2008;8(9):31–3.CrossRefGoogle Scholar

24. Kahane, G, Savulescu, J. Brain damage and the moral significance of consciousness. Journal of Medical Philosophy 2009 Feb;34(1):6–26.Google Scholar

25. Fins, JJ. 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.CrossRefGoogle ScholarPubMed

26. Fins, JJ, Suppes, A. Brain injury and the culture of neglect: Musings on an uncertain future. Social Research 2011;78(3):731–46.Google Scholar

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

28. Faden, RR, Beauchamp, TL, King, NM. A History and Theory of Informed Consent. New York: Oxford University Press; 1986.Google Scholar

29. Appelbaum, PS. Assessment of patients’ competence to consent to treatment. New England Journal of Medicine 2007;357:1834–40.CrossRefGoogle ScholarPubMed

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

31. Peterson, A, Naci, L, Weijer, C, Cruse, D, Fernández-Espejo, D, Graham, M, et al. Assessing decision making capacity in the behaviorally non-responsive patient with residual covert awareness. American Journal of Bioethics Neuroscience 2013;4(3):3–14.Google Scholar

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. Bach, M. 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; 2007:1–17.Google Scholar

35. Kulynych, J. 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.CrossRefGoogle ScholarPubMed

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

37. Tovino, S. Neuroimaging research into disorders of consciousness: Moral imperative or ethical and legal failure? Virginia Journal of Law and Technology 2008;13(2):1–53.Google Scholar

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

39. Fins, JJ, Illes, J, Bernat, JL, Hirsch, J, Laureys, S, Murphy, E. Neuroimaging and disorders of consciousness: Envisioning an ethical research agenda. American Journal of Bioethics Neuroscience 2008;8(9):3–12.CrossRefGoogle ScholarPubMed

40. Wilkinson, DJ, Kahane, G, Horne, M, Savulescu, J. Functional neuroimaging and withdrawal of life-sustaining treatment from vegetative patients. Journal of Medical Ethics 2009 Aug;35(8):508–11.CrossRefGoogle ScholarPubMed

41. Bendtsen, K. Communicating with the minimally conscious: Ethical implications in end-of-life care. American Journal of Bioethics Neuroscience 2013;4(1):46–51.Google Scholar

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

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

44. Lee, G, Byram, AC, Owen, AM, Ribary, U, Stoessl, AJ, Townson, A, et al. Canadian perspectives on the clinical actionability of neuroimaging in disorders of consciousness. Canadian Journal of Neurological Sciences 2015;42:96–105.CrossRefGoogle ScholarPubMed

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

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

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. Thompson, WC. Evaluating the admissibility of new genetic identification tests: Lessons from the “DNA War.” Journal of Law and Criminology 1993;84(1):22–104.CrossRefGoogle Scholar

53. Rodrigue, C, Riopelle, RJ, Bernat, JL, Racine, E. 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):25–36.CrossRefGoogle Scholar

54. Racine, E, Dion, M-J, Wijman, CAC, Illes, J, Lansberg, MG. Profiles of neurological outcome prediction among intensivists. Neurocritical Care 2009;11(3):345–52.CrossRefGoogle ScholarPubMed