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Published on: February 7, 2025
Incidental findings in pediatric research
Benjamin S Wilfond1, Katherine J Carpenter
1Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital, WA, USA.
Summary
Disclosing incidental research findings in children requires balancing child and parent interests. Sensitive findings are disclosed to adolescents first, serious findings to parents, and all plans must be clear during informed consent.
Area of Science:
- Pediatric research ethics
- Clinical research governance
Background:
- Managing incidental research findings in pediatric populations presents unique ethical challenges.
- The child-parent relationship and differing interests necessitate careful consideration.
Purpose of the Study:
- To propose an ethical framework for disclosing incidental research findings in children.
- To provide guidance on balancing the interests of pediatric participants and their parents.
Main Methods:
- Review of ethical principles in pediatric research.
- Analysis of child-parent dynamics in research contexts.
- Development of disclosure strategies based on finding type and severity.
Main Results:
- Findings with clear clinical importance should be disclosed to both child and parent.
- Sensitive findings (e.g., pregnancy) should be disclosed to adolescents first; serious findings (e.g., cancer) to parents first.
- Disclosure plans must be communicated during informed consent, with separate discussions for adolescents regarding sensitive findings.
Conclusions:
- A nuanced approach to incidental finding disclosure is crucial in pediatric research.
- Clear communication during informed consent is essential to manage expectations and ethical considerations.
- Limited disclosure may be appropriate for findings without clear proximate benefit in pediatric participants.
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