title: Disclosing incidental findings in brain research: the rights of minors in decision-making.
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.
authors.affiliation: National Core for Neuroethics, Division of Neurology, Department of Medicine, University of British Columbia, Vancouver, Canada; NeuroDevNet Inc., University of British Columbia, Vancouver, Canada.
authors.forename: Nina C
authors.initials: NC
authors.lastname: Di Pietro
authors.forename: Judy
authors.initials: J
authors.lastname: Illes
mesh_terms: D000293:Adolescent; D035843:Biomedical Research / Q000941:ethics* / Q000331:legislation & jurisprudence; D001927:Brain Diseases / Q000473:pathology*; D002648:Child; D003657:Decision Making / Q000941:ethics*; D030881:Disclosure / Q000941:ethics* / Q000331:legislation & jurisprudence; D005260:Female; D006801:Humans; D033162:Incidental Findings; D008279:Magnetic Resonance Imaging / Q000941:ethics; D008297:Male; D033242:Minors / Q000331:legislation & jurisprudence*; D059906:Neuroimaging / Q000941:ethics; D028701:Patient Rights / Q000941:ethics* / Q000331:legislation & jurisprudence
keywords: adolescents; children; incidental findings; neuroethics; neuroimaging