Abstract
Objectives
The current study aims to investigate young adult research participants’ experiences with and preferences regarding the disclosure of MRI incidental findings (IFs) in brain imaging research, and to elucidate the impact and long-term effects of IF disclosure on these participants.
Methods
We conducted 11 semi-structured interviews with 10 research participants to whom an IF was disclosed after they participated in brain MRI research at the Donders Institute, Centre for Cognitive Neuroimaging (DCCN) in the Netherlands. Interview transcripts were analyzed using the constant comparative method.
Results
The analysis yielded five themes regarding the impact of IF disclosure: the initial shock of disclosure, a period of uncertainty, results of the follow-up examination, long-term impact, and participants’ biomedical background. Participants were primarily impacted by the uncertainty in the period immediately following IF disclosure. For our participants, disclosure has had no health benefits and some, albeit mostly temporary and limited, negative impact.
Conclusions
Our study suggests that it is important to carefully consider IF disclosure in a population of young healthy participants and emphasizes the relevance of systematic, large-scale follow-up studies to monitor risks and benefits of IF disclosure in this population. The insights from this study can be of added value to improve current research procedures or frameworks for the management and disclosure of IFs in imaging studies.
Key Points
• Participants were primarily impacted by the uncertainty in the period immediately following IF disclosure.
• Our study suggests that it is important to carefully consider IF disclosure in a population of healthy young adult participants.
• Our study emphasizes the relevance of systematic, large-scale follow-up studies to monitor the risks and benefits of IF disclosure in this population.
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Abbreviations
- AVM:
-
Arteriovenous malformation
- DCCN:
-
Donders Institute, Centre for Cognitive Neuroimaging
- GP:
-
General practitioner
- IF:
-
Incidental finding
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Acknowledgements
The authors wish to thank all interview participants for their generous participation.
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The scientific guarantor of this publication is Anke Oerlemans, Radboud University Medical Center, Nijmegen.
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The authors of this manuscript declare no relationships with any companies whose products or services may be related to the subject matter of the article.
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No complex statistical methods were necessary for this paper.
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Written informed consent was obtained from all subjects (patients) in this study.
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Institutional Review Board approval was obtained.
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• retrospective
• qualitative study
• performed at one institution
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Oerlemans, A.J.M., Barendregt, D.M.H., Kooijman, S.C. et al. Impact of incidental findings on young adult participants in brain imaging research: an interview study. Eur Radiol 32, 3839–3845 (2022). https://doi.org/10.1007/s00330-021-08474-9
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DOI: https://doi.org/10.1007/s00330-021-08474-9