Neuroimaging research with children: ethical issues and case scenarios

Coch, Donna

doi:10.1080/03057240601185430

Cited by 4 publications

(10 citation statements)

References 58 publications

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“…In total, 11 themes emerged during the coding process (Table ). In 14 of the papers, the primary ethical concerns focused on the utility of research scans to diagnose and facilitate medical decision‐making about IFs and detection practices for IFs (n = 14) . Because research scans are not necessarily optimized for diagnosis, some researchers use clinical grade scans when children are patients enrolled in a study.…”

Section: Resultsmentioning

confidence: 99%

“…The remaining concerns revolved around informed consent (n = 13) , psychological risks associated with scanning procedures and disclosure of IFs (n = 13) , the disclosure process itself (n = 12) , the economic burden of screening for and following up IFs (n = 11) , physical risks associated with scans (n = 9) , the burden of responsibility for the principal investigator (n = 8) , uncertainties in the interpretation of results (n = 8) , confidentiality (n = 6) , and therapeutic misconception (n = 6) .…”

Section: Resultsmentioning

confidence: 99%

“…The remaining concerns revolved around informed consent (n ¼ 13) (8,10,(14)(15)(16)(17)(18)(19)(20)22,24,27,28), psychological risks associated with scanning procedures and disclosure of IFs (n ¼ 13) (4,8,10,14,16,17,20,22,23,(25)(26)(27)(28), the disclosure process itself (n ¼ 12) (4,6,8,10,15,16,20,(22)(23)(24)(25)27), the economic burden of screening for and following up IFs (n ¼ 11) (4,7,8,10,14,15,17,20,21,24,28), physical risks associated with scans (n ¼ 9) (8,…”

Section: Ethical Concerns Identified In the Literaturementioning

confidence: 99%

“…Informing parents and children about IFs prior to and during the research study (8,10,(14)(15)(16)(17)(18)(19)(20)22,24,27,28).…”

Section: Informed Consentmentioning

confidence: 99%

“…Best practices informing parents, children, and/or institutional review boards about the discovery of IFs (4,6,8,10,15,16,20,(22)(23)(24)(25)27).…”

Section: Psychological Riskmentioning

confidence: 99%

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Disclosing incidental findings in brain research: The rights of minors in decision‐making

Pietro

Illes

2013

Magnetic Resonance Imaging

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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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Section: Resultsmentioning

confidence: 99%