Ethics and Behavior 18 (2-3):139 – 160 (2008)

As children and adolescents receive increased research attention, ethical issues related to obtaining informed consent for pediatric intervention research have come into greater focus. In this article, we conceptualize parent permission and child assent within a goodness-of-fit framework that encourages investigators to create consent procedures “fitted” to the research context, the child's cognitive and emotional maturity, and the family system. Drawing on relevant literature and a hypothetical case example, we highlight four factors investigators may consider when constructing consent procedures that best reflect participants' rights, concerns, and well-being: (a) the child's current assent capacity and the likely impact of study information on the child's mental and physical development, (b) parents' understanding of their child's treatment needs and distinctions between treatment and clinical trials research, (c) the family's history of shared decision making, and (d) the child's strivings for autonomy within the context of their parents' duty to make decisions in the child's best interest.
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DOI 10.1080/10508420802063897
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References found in this work BETA

The Place of Autonomy in Bioethics.James F. Childress - 1990 - Hastings Center Report 20 (1):12-17.
Relational Ethics and Research with Vulnerable Populations.Celia B. Fisher - 1999 - Reports on Research Involving Persons with Mental Disorders That May Affect Decision-Making Capacity 2:29-49.

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A Decision Made Well.Julia F. Taylor & Mary Faith Marshall - 2018 - American Journal of Bioethics 18 (3):18-19.

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