Overview

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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9780190647278

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Reviews

"""The 18 cases selected demonstrate a remarkable range of clinical scenarios and ethical difficulties involving participants from the maternal/fetal dyad to neonate, young child, and adolescent."" --IRB: Ethical and Human Research ""The book achieves its ambitious stated purpose: a test for students of medical and research ethics; a handbook for members of institutional review boards, pediatric investigators, and government officials; a resource for clinicians whose patients and their parents may ask about clinical trials; and a guide for parents and children thinking about taking part in clinical research."" --The Lancet ""This is an excellent resource for individuals conducting and reviewing research involving children. As there are so few publications addressing the ethics of research with children, this book will be a welcome addition to researchers, students of bioethics, ethics committees, and IRB members and staff."" --Doody's ""The practical aspects of this book are its strength; its case-based approach will be most useful for researchers struggling with the ethical dilemmas raised by their investigations...This book will help researchers whose work involves children to navigate the ethical challenges of their investigations, and it will remind bioethicists of the practical concerns of researchers."" --The New England Journal of Medicine"

The 18 cases selected demonstrate a remarkable range of clinical scenarios and ethical difficulties involving participants from the maternal/fetal dyad to neonate, young child, and adolescent. --IRB: Ethical and Human Research The book achieves its ambitious stated purpose: a test for students of medical and research ethics; a handbook for members of institutional review boards, pediatric investigators, and government officials; a resource for clinicians whose patients and their parents may ask about clinical trials; and a guide for parents and children thinking about taking part in clinical research. --The Lancet This is an excellent resource for individuals conducting and reviewing research involving children. As there are so few publications addressing the ethics of research with children, this book will be a welcome addition to researchers, students of bioethics, ethics committees, and IRB members and staff. --Doody's The practical aspects of this book are its strength; its case-based approach will be most useful for researchers struggling with the ethical dilemmas raised by their investigations...This book will help researchers whose work involves children to navigate the ethical challenges of their investigations, and it will remind bioethicists of the practical concerns of researchers. --The New England Journal of Medicine

Author Information

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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