Ethics and Research with Children: A Case-Based Approach

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Eric Kodish, Robert M. Nelson
Oxford University Press, Dec 14, 2018 - Medical - 344 pages
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Fundamental questions about the morality of pediatric medical research persist despite years of debate and the establishment of strict codes of ethics. Is it ever permissible to use a child as a means to an end? How much authority should parents have over decisions about research involving their children? Should children or their parents be paid for participation in research? Most importantly, how can the twin goals of access to the benefits of clinical research and protection from research risk be reconciled?

Promoting more thoughtful attention to the complex ethical problems that arise when research involves children, this fully updated new edition of Ethics and Research with Children presents 14 case studies featuring some of the most challenging and fascinating ethical dilemmas in pediatric research. Each chapter begins with a unique case vignette, followed by rich discussion and incisive ethical analysis. Chapters represent a host of current controversies and are contributed by leading scholars from a variety of disciplines that must grapple with how to best protect children from research risk while driving innovation in the fight against childhood diseases. Chapters end with questions for discussion, providing faculty and students with accessible starting points from which to explore more in depth the thorny issues that are raised. In the final chapter, the editors provide a synthesis and summary that serve as a capstone and companion to the case-based chapters. Unique in its specific focus on research, Ethics and Research with Children provides a balanced and thorough account of the enduring dilemmas that arise when children become research subjects, and will be essential reading for those involved with pediatric research in any context.
 

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Contents

Introduction to the Second Edition
1
2 Ethical Challenges Related to Participation of Adolescents and Young Adults with Intellectual Disability in Research
7
Ethics and Research with Children A CaseBased Approach
22
An Ethical Analysis
44
5 Ethical Issues in the Neonatal SUPPORT Trial
59
A Federal Ethics Panel Protocol Review
88
7 When If Ever Is It Ethical to Do Research in Developing Countries That Could Not Be Done Ethically in Developed Countries?
122
8 The Welfare of Children Research Ethics and the Bucharest Early Intervention Project
145
11 Communication and DecisionMaking with Parents and Seriously Ill Children about Phase 1 Research Trials
184
Ethical Considerations
206
13 Social Media and Pediatric Research Recruitment
227
14 Payments for Participation of Children in Research
244
15 Clinical Innovations Near the Boundary of ViabilityThe Artificial Womb
264
Synthesis and Concluding Reflections
285
About the Editors
313
Index
317

Biospecimen Use and Genome Sequencing
155
10 Recruitment and Parental Permission for Neonatal Clinical Trials
172

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About the author (2018)


Eric Kodish, MD is Professor of Pediatrics at the Lerner College of Medicine, Cleveland Clinic.

Robert M. Nelson, MD, PhD is Senior Director of Pediatric Drug Development in the Child Health Innovation and Leadership Department (CHILD), Johnson & Johnson.

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