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Incidental Findings in Pediatric Research

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Abstract:

The approach to incidental research fndings in children emerges by considering the child-parent relationship and balancing divergent interests and preferences. Incidental fndings 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 frst, while particularly serious information (e.g., cancer) should frst 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 confdentiality 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 fndings such as pregnancy and drug use may be detected. The approach to incidental fndings without clear and proximate beneft is challenging. Researchers should plan more limited disclosure of such incidental fndings for pediatric participants than for adult participants.

Document Type: Research Article

DOI: http://dx.doi.org/10.1111/j.1748-720X.2008.00277.x

Affiliations: 1: The Director of the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital. 2: Research Associate at the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital.

Publication date: June 1, 2008

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