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Published on: July 30, 2009
Disclosing incidental findings in brain research: the rights of minors in decision-making
1National Core for Neuroethics, Division of Neurology, Department of Medicine, University of British Columbia, Vancouver, Canada; NeuroDevNet Inc., University of British Columbia, Vancouver, Canada.
Insights
Researchers reviewed studies on incidental findings (IFs) in children's brain MRI scans. They found a need to involve minors in decisions about disclosing brain abnormalities, especially those of low clinical significance.
Area of Science:
- Neuroscience
- Medical Ethics
- Pediatric Research
Background:
- Magnetic Resonance Imaging (MRI) is crucial for pediatric brain development research.
- Incidental findings (IFs) in pediatric MRI research pose unique ethical and practical challenges.
- Existing guidelines for IFs in adults are insufficient for minors in minimal risk research.
Purpose of the Study:
- To review existing literature on incidental findings in minors undergoing MRI.
- To identify ethical concerns and knowledge gaps regarding IFs in pediatric research.
- To propose a framework for managing IFs in minors.
Main Methods:
- A comprehensive literature review was conducted.
- Twenty-one papers explicitly focusing on incidental findings in minors were analyzed.
- The review examined practical issues and ethical considerations.
Main Results:
- The reviewed literature adequately addressed practical issues like consent, screening, clinical significance, cost, and risk.
- There was limited discussion on involving minors in disclosure decisions for IFs, particularly those with low clinical significance.
- Ethical discourse often overlooked the continuum of maturity and minors' rights.
Conclusions:
- A capacity-adjusted framework is proposed for managing incidental findings in pediatric research.
- This framework integrates practical management with respect for minors' rights and decision-making capacity.
- Involving competent minors in disclosure decisions is paramount, respecting their autonomy.
Abstract:
MRI is used routinely in research with children to generate new knowledge about brain development. The detection of unexpected brain abnormalities (incidental findings; IFs) in these studies presents unique challenges. While key issues surrounding incidence and significance, duty of care, and burden of disclosure have been addressed substantially for adults, less empirical data and normative analyses exist for minors who participate in minimal risk research. To identify ethical concerns and fill existing gaps, we conducted a comprehensive review of papers that focused explicitly on the discovery of IFs in minors. The discourse in the 21 papers retrieved for this analysis amply covered practical issues such as informed consent and screening, difficulties in ascertaining clinical significance, the economic costs and burden of responsibility on researchers, and risks (physical or psychological). However, we found little discussion about the involvement of minors in decisions about disclosure of IFs in the brain, especially for IFs of low clinical significance. In response, we propose a framework for managing IFs that integrates practical considerations with explicit appreciation of rights along the continuum of maturity. This capacity-adjusted framework emphasizes the importance of involving competent minors and respecting their right to make decisions about disclosure.
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