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.

Full Product Details

Author:   Eric Kodish (Professor of Pediatrics, Cleveland Clinic Lerner College of Medicine, Case Western Reserve University) ,  Robert M. Nelson (Senior Director of Pediatric Drug Development in the Child Health Innovation and Leadership Department (CHILD), Johnson & Johnson)
Publisher:   Oxford University Press Inc
Imprint:   Oxford University Press Inc
Edition:   2nd Revised edition
Dimensions:   Width: 16.30cm , Height: 2.40cm , Length: 24.40cm
Weight:   0.604kg
ISBN:  

9780190647254

ISBN 10:   0190647256
Pages:   344
Publication Date:   07 January 2019
Audience:   Professional and scholarly ,  Professional & Vocational
Format:   Hardback
Publisher's Status:   Active
Availability:   To order  
Stock availability from the supplier is unknown. We will order it for you and ship this item to you once it is received by us.

Table of Contents

Chapter 1: Ethics and Research with Children: Introduction to the Second Edition Eric Kodish and Robert M. Nelson Chapter 2: Ethical Challenges Related to Participation of Adolescents and Young Adults with Intellectual Disability in Research Pamela Nathanson, Theodore Schall, and Chris Feudtner Chapter 3: Ethical Challenges Conducting Pediatric Research in the Era of Scarce Drugs Yoram Unguru Chapter 4: Catastrophically ill children, access to unregistered medical interventions and trial recruitment needs: an ethical analysis Thomas Hartvigsson and Udo Schuklenk Chapter 5: Ethical Issues in the Neonatal Surfactant, Positive Pressure and Oximetry Randomized Trial John D. Lantos Chapter 6: Invasive Placebos, Patient Burdens and Community Advocacy: A Federal Ethics Panel Protocol Review Donna Snyder, Catherine Lee, Robert Nelson Chapter 7: When if ever, is it ethical to do research in developing countries that could not be done ethically in developed countries? Lainie Friedman Ross, MD, PhD Chapter 8: The Welfare of Children, Research Ethics and the Bucharest Early Intervention Project Maria Master and Joseph Fins Chapter 9: Ethical Issues in Genetic Research with Infants: Biospecimen Use and Genome Sequencing Erin Rothwell and Jeffrey Botkin Chapter 10: Parental Permission for Neonatal Clinical Trials Benjamin Wilfond and Anita Shah Chapter 11: Communication and Decision-Making with Parents and Seriously Ill Children about Phase 1 Research Trials Melissa K. Cousino, Wynne E. Morrison, and Victoria A. Miller Chapter 12: Involving Parents and Children in Community Engaged Research: Ethical Considerations Erin Talati Paquette and Lainie Friedman Ross Chapter 13: Social Media and Pediatric Research Recruitment Luke Gelinas and Jennifer Cohn Kesselheim Chapter 14: Payments for Participation of Children in Research Douglas S. Diekema Chapter 15: Clinical innovations near the boundary of viability - the artificial womb Ryan Antiel and Alan W. Flake Chapter 16: Synthesis and Concluding Reflections Robert M. Nelson and Eric Kodish

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 Ethics and Research with Children: A Case-Based Approach is a primary text for anyone conducting pediatric clinical research. The case-absed approach illuminates the practical details behind each chapter's recommendations and conclusions. --Journal of Clinical Research Best Practices 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

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 * 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 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 * 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. * <I>IRB: Ethical and Human Research</I> * Ethics and Research with Children: A Case-Based Approach is a primary text for anyone conducting pediatric clinical research. The case-absed approach illuminates the practical details behind each chapter's recommendations and conclusions. * Journal of Clinical Research Best Practices * 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 * 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 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 * 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 *

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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