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(p. 184) Communication and Decision-Making with Parents and Seriously Ill Children about Phase 1 Research Trials 

(p. 184) Communication and Decision-Making with Parents and Seriously Ill Children about Phase 1 Research Trials
Chapter:
(p. 184) Communication and Decision-Making with Parents and Seriously Ill Children about Phase 1 Research Trials
Author(s):

Melissa K. Cousino

, Wynne E. Morrison

, and Victoria A. Miller

DOI:
10.1093/med-psych/9780190647254.003.0011
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date: 09 December 2019

This chapter uses a case study to explore communication and decision-making with parents and seriously ill children about phase 1 research trials. The chapter begins with a case scenario about 13 year-old “Gabby,” who has relapsed high-risk acute myeloid leukemia, which brings to the forefront ethical issues specific to communication and decision-making with parents and seriously ill children about phase 1 research trials. A brief history on phase 1 research trials in pediatric oncology is provided, followed by a review of the scientific literature regarding challenges to informed consent and child assent in this context. The chapter ends with evidence-based strategies for improving informed consent for pediatric phase 1 trials and questions for discussion.

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