Ethics and Research with Children: A Case-Based Approach

Ethics and Research with Children: A Case-Based Approach

Ethics and Research with Children: A Case-Based Approach

Ethics and Research with Children: A Case-Based Approach


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.


Putting together a book can best be described as a labor of love. This book has been a team effort from the start and has been a true pleasure to edit and assemble. the idea for the book emerged from the first meeting of our core research team in a project entitled “Pediatric Research Ethics: a Multidisciplinary Analysis.” With generous funding from the Greenwall Foundation, we brought together a diverse and talented group of scholars to tackle the difficult issues raised by involving children in research. As we talked about a mechanism to disseminate our work, it quickly became apparent that a book-length treatment of the subject was needed. For this reason, the first thank you goes to Mr. William Stubing and the Greenwall Foundation, which made this project possible.

The members of the Greenwall project team and consultants, as well as other colleagues in the small world of pediatric ethics, quickly became the contributors to this book. the quality of the final product reflects the excellent scholarship, wonderful writing, and critical thinking of these outstanding individuals. I am personally grateful to each of the contributors for the effort and thoughtfulness that I know will be apparent to readers.

Several special people helped to make this book possible. Amy HarrisYamokoski assisted with the formatting and editing process. Shlomit Zuckerman provided most of the questions for discussion that will help to make this a userfriendly teaching tool. Linda Robinson tolerated my countless requests for organizing the chapters and printing hard copies, helping me to keep track of just about everything. Finally, Michelle Eder directed the initial research project and quickly assumed many of the organizational and administrative responsibilities for bringing the book together. in addition to contributing an outstanding chapter, her dependable assistance, patience, and good judgment are highly valued and appreciated.

My colleagues at Rainbow Babies and Children's Hospital and Case Western Reserve University provided the fertile academic setting that makes the climate right for growing books. I am especially grateful to my research team and colleagues at the Rainbow Center for Pediatric Ethics for their insight and camaraderie. the children with cancer and blood diseases that I have had the privilege of caring for over the years, and their dedicated and courageous families, continue to inspire me and help me to recognize more clearly the need for better research to save lives and relieve suffering.

Joan Bossert, Lisa Stallings, and the team at Oxford University Press have helped me to understand the process of bringing this book from idea to reality. I appreciate their support and enthusiasm for this project.

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