David Bourget (Western Ontario)
David Chalmers (ANU, NYU)
Rafael De Clercq
Jack Alan Reynolds
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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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Katherine H. Frost, Sarah Hope Lincoln, Emily M. Norkett, Michelle X. Jin, Joseph Gonzalez-Heydrich & Eugene J. D’Angelo (forthcoming). The Ethical Inclusion of Children With Psychotic Disorders in Research: Recommendations for an Educative, Multimodal Assent Process. Ethics and Behavior:1-13.
Celia B. Fisher (2015). Enhancing the Responsible Conduct of Sexual Health Prevention Research Across Global and Local Contexts: Training for Evidence-Based Research Ethics. Ethics and Behavior 25 (2):87-96.
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