Ethics and Research with Children: A Case-Based Approach

Hardcover | February 24, 2005

EditorEric Kodish

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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 meansto 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 dyingchildren? 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 bereconciled? 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 ethicalissues, 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 researchsubjects.

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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 meansto an end? How much authority should parents...

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....

other books by Eric Kodish

Format:HardcoverDimensions:376 pages, 6.42 × 9.21 × 1.3 inPublished:February 24, 2005Publisher:Oxford University PressLanguage:English

The following ISBNs are associated with this title:

ISBN - 10:0195171780

ISBN - 13:9780195171785

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Table of Contents

1. Eric Kodish: Ethics and Research with ChildrenPart I: Research Involving Healthy Children2. Paul Miller and Charles Weijer: Evaluating benefits and harms in research on healthy children3. Susan Coffin and Robert M. Nelson: Optimizing risk and benefit: The case of Rotavirus Vaccine4. John Lantos and Molly Martin: Prospects and perils in the regulation of community based research involving children5. Alan Fleischman and Lauren Collogan: Adolescent research and parental permission6. 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 StudyPart II: Research Involving At-Risk Children7. Lainie Friedman Ross: The ethics of newborn screening Diabetes research8. Douglas S. Diekema: Payments for participation of children in research9. Robert M. Nelson: Justice, lead and environmental research involving childre10. Gerald P. Koocher: Behavioral Research with Children: The Fenfluramine challenge11. Gail Geller: The ethics of predictive genetic testing in prevention trials involving adolescentsPart III: Research Involving Children With Serious Illness12. Rebecca Dresser: Research ethics and maternal fetal surgery13. Michelle Eder: Testing drugs in developing countries: Pediatric research ethics in an international context14. Joel Frader and Erin Flanagan-Klygis: Research and innovation in pediatric surgery: The problem of Hypoplastic Left-heart Syndrome15. Christopher Church, Victor M. Santana, Pamela S. Hinds, and Edwin M. Horowitz: Near the boundary of research: Roles, responsibilites and resource allocation16. Jessica Berg: Children and Placebos17. Benjamin Wilfond and Fabio Candotti: When eligability and criteria clash with personal treatment choice: A dilemma of clinical research18. 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 negotiationIndex

Editorial Reviews

"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 theirinvestigations, and it will remind bioethicists of the practical concerns of researchers."--The New England Journal of Medicine