Ethical Issues in Child Abuse Research PDF
Preview Ethical Issues in Child Abuse Research
Katherine Guttmann Michelle Shouldice Alex V. Levin Ethical Issues in Child Abuse Research 123 Ethical Issues in Child Abuse Research Katherine Guttmann Michelle Shouldice • Alex V. Levin Ethical Issues in Child Abuse Research Katherine Guttmann, MD, MBE Michelle Shouldice, MD Children’s Hospital of Hospital for Sick Children Philadelphia Toronto, ON University of Pennsylvania Canada Philadelphia, PA USA Alex V. Levin, MD, MHSc Wills Eye Hospital, Sidney Kimmel Medical College Thomas Jefferson University Philadelphia, PA USA ISBN 978-3-319-94585-9 ISBN 978-3-319-94586-6 (eBook) https://doi.org/10.1007/978-3-319-94586-6 Library of Congress Control Number: 2018957085 © Springer Nature Switzerland AG 2019 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of transla- tion, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimi- lar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of pub- lication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland This book is dedicated to all of the children and families we have had the privilege to serve, the hard working child abuse researchers who have dedicated their lives to creating the evidence base which allows us to serve and protect these children and families, all those who helped to make this book possible, and our own families who have supported us along this journey. Preface Prevention, diagnosis, management, and treatment of child abuse require knowledge. This knowledge is generated through research. Since the 1960s, with the evolution of the field of medical bioethics, much progress has been made in developing ethical strategies for research. The field of child abuse research brings to the table unique challenges. Is it ethical to use animals as models for human abuse? Can a par- ent who has abused their child be relied on as an unbiased substitute decision-maker to give informed consent? How do researchers interface with the legal system in terms of disclo- sure and sharing of results? How can the identity and privacy of victims acting as subjects of research be respected? If abuse is uncovered in the process of research, what are the obligations to report and protect the child? Can perpetrators serve as viable subjects to allow researchers to learn more about the acts they’ve committed and why they did so? Lastly, how can these questions be answered in a way that protects vulnerable populations such as children and prisoners, yields valuable information for future progress, and respects privacy while interacting in a complex legal system? It was with these and other questions in mind that a work- ing multidisciplinary conference was convened over a decade ago with 46 professionals trying to develop guidance for researchers and also Research Ethics Boards/Institutional Review Boards who may be struggling with these issues. Over the years since that meeting, these ideas have been distilled and investigated to create this book. The authors are grateful to all the participants listed herein who laid the groundwork for the development of what we believe is a novel useful viii Preface compendium to help direct researchers and regulatory bodies with the goal of establishing sound evidence bases for our care of children and families affected by abuse. Research is essential. The best care can only be delivered with the knowledge created by the scientific method. Decades of thought and implementation have led us to a better world in terms of our ethical considerations while doing research. Now we hope to provide readers with a pathway to apply these principles to the challenging field of child abuse research ethics. Philadelphia, PA, USA Katherine Guttmann, MD, MBE Toronto, Ontario, Canada Michelle Shouldice, MD, FRCPC Philadelphia, PA, USA Alex V. Levin, MD, MHSc, FRCSC Acknowledgements The authors wish to gratefully acknowledge the invaluable support of our research fellows who were instrumental in making this book happen. Waleed Abed Alnabi, MD Médecins Sans Frontières Avrey Thau, BS Sidney Kimmel Medical College at Thomas Jefferson University The following professionals participated in the 2006 con- ference which served as the nidus of this work. Their dialogue and input in working groups was essential to the formulation of the concepts which became the content of this book. Their affiliations at the time of the meeting are listed below, illus- trating the diverse and multidisciplinary approach to the topic which enriched the conversation at the meeting. Their partici- pation was instrumental to our understanding of the ethical challenges of research in the field of child abuse and neglect. Marilyn Barr, BIS Founder and Executive Director, National Center on Shaken Baby Syndrome Ronald Barr, MDCM, FRCP Department of Paediatrics University of British Columbia Faculty of Medicine Jaques Belik, MD, FRCPC Departments of Paediatrics and Physiology The Hospital for Sick Children, Toronto x Acknowledgements Sue Bennett, MB, ChB, FRCP, DTM&H, DRCOG, DCH, Dip, Psych President, Child & Youth Maltreatment Section at the Canadian Paediatric Society Diane Benoit, MD, FRCPC The Hospital for Sick Children, Toronto Rachel P. Berger MD, MPH Children’s Hospital of Pittsburgh of UPMC Anne-Claude Bernard-Bonnin, MD, FRCPC Department of Pediatrics Université de Montréal Robert W. Block, MD, FAAP University of Oklahoma Health Sciences Center Barbara L. Bonner, PhD University of Oklahoma Health Sciences Center Cecile Brookes President, Foster Parent Society of Ontario David L. Chadwick, MD Director Emeritus, Chadwick Center for Children and Families Rady Children's Hospital of San Diego Cindy W. Christian, MD The Children's Hospital of Philadelphia Mary Clyde Pierce, MD University of Louisville David L. Corwin, MD Pediatrics Department, University of Utah School of Medicine Kathleen Coulborn Faller, PhD, A.C.S.W. Professor of Children and Families University of Michigan School of Social Work Claire Allard-Dansereau, MD, FRCPC CHU Sainte-Justine, Université de Montréal Acknowledgements xi Andrea Doria, MD, PhD, MSc Department of Radiology The Hospital for Sick Children, Toronto Howard Dubowitz, MD, MS, FAAP Department of Pediatrics University of Maryland School of Medicine Margo Farren The Hospital for Sick Children, Toronto Deborah Goodman, PhD, MSW Children’s Aid Society of Toronto Christine Harrison, PhD Director of Bioethics The Hospital for Sick Children, Toronto Karen Seaver Hill Children’s Hospital Association Carole Jenny, MD, MBA, FAAP Department of Pediatrics Brown University Laurel A. Chauvin-Kimoff, MDCM, FRCPC, FAAP Child & Youth Maltreatment Section at the Canadian Paediatric Society Paul K. Kleinman, MD Department of Radiology Boston Children’s Hospital David J. Kolko, PhD Department of Psychiatry University of Pittsburgh School of Medicine Eoghan Laffan Department of Radiology The Hospital for Sick Children, Toronto Antoinette Laskey, MD, MPH, MBA University of Utah and Primary Children’s Hospital
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