Are patients with amyotrophic lateral sclerosis at risk of a therapeutic misconception?

Abstract

In this group of patients with ALS considering a hypothetical first-in-human intervention study, apparent TM responses have alternative explanations and the risk of true TM appears low.

Understanding the ‘therapeutic misconception’ from the research participant’s perspective

“…We found that hypothetical scenarios will induce apparent TM answers even in non-patients, and that in most of those cases, subjects did not interpret the TM question as intended. We found the same in the current study involving persons with amyotrophic lateral sclerosis (ALS) 1. (Regarding our subjects, we note that, contrary to Appelbaum's speculation, the proportion of persons with an altruistic motive was similar to that in actual Parkinson's disease surgical trial participants 10.…”

“…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.…”

Positive Attitudes and Therapeutic Misconception Around Hypothetical Clinical Trial Participation in the Huntington’s Disease Community

“…Research examining views of the general public on various diseases suggests that positive views regarding clinical research generally correlate with motivation to participate in trials [7][8][9][10]. However, therapeutic misconception, wherein an individual does not understand that the primary purpose of research is to produce generalizable knowledge and not for their own personal benefit, is relatively common in the general public [9,[11][12][13][14]. Therapeutic misconception is concerning because it precludes the ability of a potential participant to provide truly informed consent [13,15].…”

Faith, Hope And (No) Clarity

“…The dispute between Appelbaum and Kim is only in its infancy. Three articles in this month's issue continue the dialogue between them 10–12. It is through this kind of debate that we might achieve some clarity around the elements that impact on consent process, and ultimately on the protection of human subjects.…”