Hostname: page-component-78c5997874-xbtfd Total loading time: 0 Render date: 2024-11-10T17:22:15.122Z Has data issue: false hasContentIssue false
  • English
  • Français

The Therapeutic “Mis”conception: An Examination of its Normative Assumptions and a Call for its Revision

Published online by Cambridge University Press:  07 December 2017

DEBRA J.H. MATHEWS ,
JOSEPH J. FINS  and
ERIC RACINE
Get access Rights & Permissions [Opens in a new window]

Extract

Dissecting Bioethics, edited by Tuija Takala and Matti Hayry, welcomes contributions on the conceptual and theoretical dimensions of bioethics. The department is dedicated to the idea that words defined by bioethicists and others should not be allowed to imprison people’s actual concerns, emotions, and thoughts. Papers that expose the many meanings of a concept, describe the different readings of a moral doctrine, or provide an alternative angle to seemingly self-evident issues are particularly appreciated. To submit a paper or to discuss a suitable topic, contact Tuija Takala at tuija.takala@helsinki.fi.

Keywords

therapeutic misconceptionBelmont Reportpaternalismresearch practice
Type
Departments and Columns
Information
Cambridge Quarterly of Healthcare Ethics , Volume 27 , Issue 1 , January 2018 , pp. 154 - 162
Copyright
Copyright © Cambridge University Press 2017 

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. Appelbaum, PS, Grisso, T, Frank, E, O’Donnell, S, Kupfer, DJ. Competence of depressed patients for consent to research. American Journal of Psychiatry 1999;156(9):1380–4.Google Scholar

2. United States Department of Health and Human Services. ANPRM for revision to common rule: Information related to advance notice of proposed rulemaking (ANPRM) for revisions to the common rule. Federal Register 2001;76(143):44512–31.Google Scholar

3. Olver, IN, Evolving definitions of hope in oncology. Current Opinion in Supportive and Palliative Care 2012;6(2):236–41.CrossRefGoogle Scholar

4. National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (NBAC). The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research, Publication OS 78-0012. Washington, DC: Department of Health, Education, and Welfare; 1978; Henderson, GE, Churchill, LR, Davis, AM, Easter, MM, Grady, C, Joffe, S, et al. Clinical trials and medical care: defining the therapeutic misconception. PLOS Medicine 2007;4(11):e324.CrossRefGoogle ScholarPubMed

5. Horng, S, Grady, C. Misunderstanding in clinical research: Distinguishing therapeutic misconception, therapeutic misestimation, and therapeutic optimism. IRB 2003;25(1):11–6.CrossRefGoogle ScholarPubMed

6. Jansen, LA. Two concepts of therapeutic optimism. Journal of Medical Ethics 2011;37(9):563–6.CrossRefGoogle ScholarPubMed

7. Valenstein, ES. Great and Desperate Cures: The Rise and Decline of Psychosurgery and Other Radical Treatments for Mental Illness. New York: Basic Books; 1986;Google Scholar Pressman, JD. Last Resort: Psychosurgery and the Limits of Medicine. Cambridge: Cambridge University Press; 1998.Google Scholar

8. Bell, E, Racine, E, Chiasson, P, Dufourcq-Brana, M, Dunn, LB, Fins, JJ, et al. Beyond consent in research: Revisiting vulnerability in deep brain stimulation for psychiatric disorders. Cambridge Quarterly of Healthcare Ethics 2014;23(3):361–8.CrossRefGoogle ScholarPubMed

9. Grisso, T, Appelbaum, PS. The MacArthur Treatment Competence Study, III: Abilities of patients to consent to psychiatric and medical treatments. Law and Human Behavior 1995;19(2):149–74;CrossRefGoogle ScholarPubMed see note 1, Appelbaum et al. 1999; Lapid, MI, Rummans, TA, Poole, KL, Pankratz, VS, Maurer, MS, Rasmussen, KG, et al. Decisional capacity of severely depressed patients requiring electroconvulsive therapy. Journal of ECT 2003;19(2):67–72;CrossRefGoogle ScholarPubMed Cohen, BJ, McGarvey, EL, Pinkerton, RC, Kryzhanivska, L. Willingness and competence of depressed and schizophrenic inpatients to consent to research. Journal of the American Academy of Psychiatry and the Law 2004;32(2):134–43.Google Scholar

10. Giacino, J, Fins, JJ, Machado, A, Schiff, ND. Central thalamic deep brain stimulation to promote recovery from chronic post-traumatic minimally conscious state: Challenges and opportunities. Neuromodulation 2012;15(4):330–49;CrossRefGoogle Scholar Mathews, DJH, Jamal, L. Revisiting respect for persons in genomic research. Genes 2014;5(1):1–12;CrossRefGoogle ScholarPubMed see note 8, Bell et al. 2014.

11. Olsen L, Aisner D, McGinnis JM, eds. Institute of Medicine, IOM Roundtable on Evidence-Based Medicine, The Learning Healthcare System: Workshop Summary. Washington, DC: National Academies Press; 2007; Faden RR, Kass NE, Goodman SN, Pronovost P, Tunis S, Beauchamp TL. An ethics framework for a learning health care system: A departure from traditional research ethics and clinical ethics. Hastings Center Report Special Report 2013;43(1):S16–S27; Kass NE, Faden RR, Goodman SN, Pronovost P, Tunis S, Beauchamp TL. The research-treatment distinction: A problematic approach for determining which activities should have ethical oversight. Hastings Center Report Special Report 2013;43(1):S4–S15.

12. We intentionally shift to “participant” rather than “subject” here to reflect and encourage the shift in thinking among researchers that sees individuals as participants in research rather than as subject to research.

13. Hickey, SS. Enabling hope. Cancer Nursing 1986;9(3):133–7.CrossRefGoogle ScholarPubMed

14. Pentz, RD, White, M, Harvey, RD, Farmer, ZL, Liu, Y, Lewis, C, et al. Therapeutic misconception, misestimation, and optimism in participants enrolled in phase I trials. Cancer 2012;118(18):4571–8.CrossRefGoogle Scholar

15. Kim, SYH, de Vries, R, Wilson, R, Parnami, S, Frank, S, Kieburtz, K, et al. Research participants’ “irrational” expectations: common or commonly mismeasured? IRB 2013;35(1):1–9.Google ScholarPubMed

16. See note 14, Pentz et al. 2012; see note 15, Kim et al.; Sulmasy DP, Astrow AB, He MK, Seils DM, Meropol NJ, Micco E, et al. The culture of faith and hope: Patients’ justifications for their high estimations of expected therapeutic benefit when enrolling in early phase oncology trials. Cancer 2010;116(15):3702–11; Weinfurt KP, Seils DM, Lin L, Sulmasy DP, Astrow AB, Hurwitz HI, et al. Research participants’ high expectations of benefit in early-phase oncology trials: are we asking the right question? Journal of Clinical Oncology 2012;30(35):4396–400.

17. Erby, LH, Rushton, C, Geller, G. ‘My son is still walking’: Stages of receptivity to discussions of advance care planning among parents of sons with Duchenne muscular dystrophy. Seminars in Pediatric Neurology 2006;13(2):132–40.CrossRefGoogle Scholar

18. Daugherty C, Ratain MJ, Grochowski E, Stocking C, Kodish E, Mick R, et al. Perceptions of cancer patients and their physicians involved in phase I trials. Journal of Clinical Oncology 1995;13(5):1062–72; Kass NE, Sugarman J, Faden R, Schoch-Spana M. Trust: The fragile foundation of contemporary biomedical research. Hastings Center Report 1996;26(5):25–9; Dresser R. The ubiquity and utility of the therapeutic misconception. Social Philosophy and Policy 2003;19(2):271–94; Henderson GE, Davis AM, King NM, Easter MM, Zimmer CR, Rothschild BB, et al. Uncertain benefit: Investigators’ views and communications in early phase gene transfer trials. Molecular Therapy 2004;10(2):225–31.

19. See note 18, Kass et al. 1996.

20. See note 17, Erby et al. 2006.

21. Fins, JJ. Surgical innovation and ethical dilemmas: Precautions and proximity. Cleveland Clinic Journal of Medicine 2008;75(Suppl 6):S7–12.CrossRefGoogle ScholarPubMed

22. Canterbury v. Spence, 464 F.2d 772, 1972; Truman v. Thomas, 165 Cal. Rptr. 308, 1980.