Incidental findings in pediatric research.
The approach to incidental research findings in children emerges by considering the child-parent relationship and balancing divergent interests and preferences. Incidental findings with clear and proximate clinical importance should be disclosed to both. We recommend that particularly sensitive or private information (e.g., pregnancy or drug use) should be disclosed to the adolescent first, while particularly serious information (e.g., cancer) should first be disclosed to the parent. These approaches allow the researcher to form an alliance with one party prior to engaging the other. However, unlike clinical settings, where there may be presumptive expectations of confidentiality about sharing information within the family, in most research settings it is reasonable to plan to disclose such information to both parties. It is important to communicate this plan during the informed consent process separately to adolescents to avoid enrolling adolescents when sensitive incidental findings such as pregnancy and drug use may be detected. The approach to incidental findings without clear and proximate benefit is challenging. Researchers should plan more limited disclosure of such incidental findings for pediatric participants than for adult participants.
Wilfond
Benjamin S
BS
Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital, WA, USA.
Carpenter
Katherine J
KJ
D000293:Adolescent; D035843:Biomedical Research / Q000941:ethics*; D002648:Child; D003657:Decision Making; D030881:Disclosure / Q000941:ethics; D006801:Humans; D033162:Incidental Findings; D010287:Parent-Child Relations; D028701:Patient Rights / Q000941:ethics*; D010372:Pediatrics