Overview

In this edited volume, a diverse group of scholars present and discuss challenging cases in the field of pediatric research ethics. After years of debate and controversy, fundamental questions about the morality of pediatric research persist: Is it ever permissible to use a child as a means to an end? How much authority should parents have over decisions about research that involves young children? What should be the role of the older child in decisions about research participation? How do the dynamics of hope and desperation influence decisions about research involving dying children? Should children or their parents be paid for participation in research? What about economic incentives for doctors, researchers and the pharmaceutical industry? Most importantly, how can the twin goals of access to the benefits of clinical research and protection from research risk be reconciled? Following an introductory overview by editor Eric David Kodish, the book is divided into three sections of case studies: Research Involving Healthy Children, Research Involving At Risk Children, and Research Involving Children with Serious Illness. Each case raises compelling ethical issues, and the analysis presented in each chapter illuminate the challenges posed across a wide spectrum of both research protocols and stories of individual case-based approach, this book provides a balanced and through account of the enduring dilemmas that arise when children become research subjects.

Full Product Details

Author:   Eric Kodish
Publisher:   Oxford University Press Inc
Imprint:   Oxford University Press Inc
Dimensions:   Width: 16.40cm , Height: 2.70cm , Length: 24.30cm
Weight:   0.635kg
ISBN:  

9780195171785

ISBN 10:   0195171780
Pages:   376
Publication Date:   11 March 2005
Audience:   Professional and scholarly ,  Professional & Vocational
Format:   Hardback
Publisher's Status:   Active
Availability:   Manufactured on demand  
We will order this item for you from a manufactured on demand supplier.

Table of Contents

1: Eric Kodish: Ethics and Research with Children Part I: Research Involving Healthy Children 2: Paul Miller and Charles Weijer: Evaluating benefits and harms in research on healthy children 3: Susan Coffin and Robert M. Nelson: Optimizing risk and benefit: The case of Rotavirus Vaccine 4: John Lantos and Molly Martin: Prospects and perils in the regulation of community based research involving children 5: Alan Fleischman and Lauren Collogan: Adolescent research and parental permission 6: John Santelli, Gail Geller, Donna T. Chen, Marjorie A Speers, Jeffrey R. Botkin, and Stacy Laswell: Recruitment of pregnant, minor adolescents and minor adolescents at risk of pregnancy into longitudinal, observational research: The National Children's Study Part II: Research Involving At-Risk Children 7: Lainie Friedman Ross: The ethics of newborn screening Diabetes research 8: Douglas S. Diekema: Payments for participation of children in research 9: Robert M. Nelson: Justice, lead and environmental research involving childre 10: Gerald P. Koocher: Behavioral Research with Children: The Fenfluramine challenge 11: Gail Geller: The ethics of predictive genetic testing in prevention trials involving adolescents Part III: Research Involving Children With Serious Illness 12: Rebecca Dresser: Research ethics and maternal fetal surgery 13: Michelle Eder: Testing drugs in developing countries: Pediatric research ethics in an international context 14: Joel Frader and Erin Flanagan-Klygis: Research and innovation in pediatric surgery: The problem of Hypoplastic Left-heart Syndrome 15: Christopher Church, Victor M. Santana, Pamela S. Hinds, and Edwin M. Horowitz: Near the boundary of research: Roles, responsibilites and resource allocation 16: Jessica Berg: Children and Placebos 17: Benjamin Wilfond and Fabio Candotti: When eligability and criteria clash with personal treatment choice: A dilemma of clinical research 18: Myra Bluebond-Langner, Amy DeCicco, and Jean Belasco: Involving children in decisions about research and treatment for life shortening illness: A proposal for shuttle diplomacy and negotiation Index

Reviews

<br> 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<p><br> 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<p><br> 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<p><br> The practical aspects of this book

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<br> 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<br> 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<br> 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<br>

Author Information

Dr. Eric Kodish is a teacher, researcher, and physician who cares for children with cancer and blood diseases. He is the Chairman of the Department of Bioethics at The Cleveland Clinic Foundation and a Professor of Bioethics, Pediatrics and Oncology at the Cleveland Clinic Lerner College of Medicine at Case Western Reserve University. His primary rersearch interest has been the study of informed consent for pediatric leukemia trials. He is an appointed member of the Committee on Bioethics of the American Academy of Pediatrics, and chairs the Bioethics Committee of the Children's Oncology Group. He has been active in multiple roles at the National Institutes of Health and the Food and Drug Administration, and is a member of the Secretary's Advisory Committee on Human Research Protections Subcommittee for Research Involving Children.

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