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Research ethics
Response
Understanding the ‘therapeutic misconception’ from the research participant’s perspective
  1. Scott Y H Kim1,
  2. Raymond De Vries2,3,
  3. Robert G Holloway4,
  4. Karl Kieburtz4,5
  1. 1Department of Bioethics, National Institutes of Health, Bethesda, Maryland, USA
  2. 2Center for Bioethics and Social Sciences, University of Michigan, Ann Arbor, Michigan, USA
  3. 3Department of Learning Health Sciences, University of Michigan, Ann Arbor, Michigan, USA
  4. 4Department of Neurology, University of Rochester, Rochester, New York, USA
  5. 5Center for Human Experimental Therapeutics, University of Rochester, Rochester, New York, USA
  1. Correspondence to Dr Scott Y H Kim, Department of Bioethics, National Institutes of Health, Clinical Center, 10 Center Drive, 1C118, Bethesda, MD 20892, USA; scott.kim{at}nih.gov

https://doi.org/10.1136/medethics-2016-103597

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    Dr Appelbaum's specific criticisms of our study1 rely on two general assertions with which he begins his commentary: that ‘dozens of studies’ have ‘confirmed’ the high prevalence of the therapeutic misconception (TM) and that our current study ‘exemplifies’ our group's overall research programme on TM, going so far as to attribute a non-scientific motive to our efforts. We think the readers deserve a fuller picture of the actual state of TM research as well as a more accurate picture of our overall TM research programme. Such a picture will explain why, in the current study, we used the methods we did and how we interpreted the results.

    First, we agree that the conventional wisdom takes it as a ‘given’ that TM is ubiquitous. But we disagree that the current evidence base supports that conventional view. Even after decades and ‘dozens’ of studies on TM, there is no widely accepted definition of TM.2 Some definitions in fact incorporate conceptual errors, such as the idea that desire for benefit is inherently an indication of TM,3 ignoring the fact that people volunteer for studies with the hope for benefit but understand perfectly well that the study's primary purpose is not to benefit them. In fact, research subjects quite often respond to interview questions intended to measure TM with answers that both support and contradict the presence of TM,3–5 making it difficult to interpret what they actually believe.6 The desire to understand and clarify this messy state of …

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    Footnotes

    • Contributors SYK drafted and revised the manuscript for intellectual content, designed and conceptualised the study, analysed and interpreted the data, supervised and coordinated the study and gave final approval of this manuscript; RDV revised the manuscript for intellectual content, designed and conceptualised the study, analysed and interpreted the data, supervised and coordinated the study and gave final approval of this manuscript; RGH revised the manuscript for intellectual content, designed and conceptualised the study, analysed and interpreted the data and gave final approval of this manuscript; KK revised the manuscript for intellectual content, designed and conceptualised the study, analysed and interpreted the data and gave final approval of this manuscript. All authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

    • Funding There was no special funding for the writing of this commentary.

    • Disclaimer The opinions in the article are the authors' own and do not represent the views of the NIH, DHHS or the federal government.

    • Competing interests KK reports the following financial disclosures. He is a consultant for National Institutes of Health (NINDS), Acorda, Astellas Pharma, AstraZeneca, Auspex, Biotie, Britannia, Cangene, CHDI, Clearpoint Strategy Group, Clintrex, Cynapsus, INC Research, Intec, Isis, Lilly, Lundbeck, Medivation, Melior Discovery, Neuroderm, Neurmedix, Omeros, Otsuka, Pfizer, Pharm2B, Prothena/Neotope/Elan Pharmaceutical, Raptor Pharmaceuticals, Roche/Genentech, Sage Bionetworks, Serina, Stealth Peptides, SynAgile, Teikoku Pharma, Titan, Turing Pharmaceuticals, Upsher-Smith, US WorldMeds, Vaccinex, Voyager, Weston Brain Institute. He received grants/research support from National Institutes of Health (NINDS), Michael J Fox Foundation and Teva. RGH is an Associate Editor of Neurology Today and is a consultant to MCG reviewing neurology guidelines. He also received funding from the NIH.

    • Provenance and peer review Commissioned; internally peer reviewed.

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