Neuroimaging research has brought major advances to child health and wellbeing. However, because of the vulnerabilities associated with neurological and developmental conditions, the parental need for hope, and the expectation of parents that new medical advances can benefit their child, pediatric neuroimaging research presents significant challenges to the general problem of consent in the context of research involving children. A particular challenge in this domain is created by the presence of therapeutic misconception on the part of parents and other key research stakeholders. This article revierws the concept of therapeutic misconception and its role in pediatric neuroimaging research. It argues that this misconception can compromise consent given by parents for the involvement of their children in research as healthy controls or as persons with neurological and developmental conditions. The article further contends that therapeutic misconception can undermine the research ethics review process for proposed and ongoing neuroimaging studies. Against this backdrop, the article concludes with recommendations for mitigating the effects of therapeutic misconception in pediatric neuroimaging research.
In this paper, we first briefly describe neuroimaging technology, our reasons for studying magnetic resonance imaging (MRI) technology, and then provide a discussion of what we have identified as priority issues for paediatric MRI research. We examine the issues of respectful involvement of children in the consent process as well as privacy and confidentiality for this group of MRI research participants. In addition, we explore the implications of unexpected findings for paediatric MRI research participants. Finally, we explore the ethical issues concerning advances in functional MRI. This paper aims to provide a clear description of priority paediatric MRI research ethics issues to make some preliminary recommendations regarding next steps.Tremendous technological strides in the field of biomedical imaging over the past few decades have resulted in advances in non-invasive disease detection, and are now making substantial contributions to our understanding of underlying anatomy and physiology in normal and disease-related conditions. Nowhere has the impact of this technology been more dramatic than the neurosciences, where neuroimaging holds the apparent promise of not only assisting with the effective and timely detection of diseases involving the central nervous system, but also of "prob[ing] into our deepest thoughts" [1] and greatly expanding our knowledge of the neural basis of human cognition [2], personality and emotion [3] as well as disorders like addiction. Although it is difficult to predict the scope of influence of these technological developments, neuroimaging is also likely to challenge established conceptions of free will, consciousness, rational decision-making, and individuality [1].
The current decision-making model for the review of human research contains inadequate mechanisms to ensure that the interests and perspectives of research participants are considered by Institutional Review Boards, whose decisions may profoundly affect the safety and well-being of participants. As a result, this model is far from being optimized to realize Institutional Review Boards' principal mandate and undermines the credibility of the research review process. This article proposes a procedural mechanism that would ameliorate these systemic deficiencies by allowing "research participant representatives" to give voice to participants during the research review process.
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