Ethics and Research with Children: A Case-Based Approach

Ethics and Research with Children: A Case-Based Approach (2 ed.)

Edited by:
Eric Kodish
Eric KodishProfessor of Pediatrics, Cleveland Clinic Lerner College of Medicine, Case Western Reserve UniversityClose

and
Robert M. Nelson
Robert M. NelsonSenior Director of Pediatric Drug Development in the Child Health Innovation and Leadership Department (CHILD), Johnson & JohnsonClose

Abstract

In Ethics and Research with Children, authors present and discuss challenging cases in the field of pediatric research ethics. This 2nd Edition includes a revised and updated introduction along with 13 completely new chapters with compelling cases, analysis and questions for discussion. 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? How do economic incentives for doctors, researchers, and the pharmaceutical industry factor into the decisions? Most importantly, how can the twin goals of access to the benefits of clinical research and protection from the risks research involves be reconciled?

This volume complements but does not replace the 1st Edition of this book published in 2005. Using a case-based approach, the Second Edition of Ethics and Research with Children provides a balanced and thorough account of the enduring dilemmas that arise when children become research subjects

Keywords: Children, research, ethics, assent, parental permission, consent, risk, benefit

Bibliographic Information

Publisher:: Oxford University Press

Print Publication Date:: Nov 2018

Print ISBN-13:: 9780190647254

Published online:: Nov 2018

DOI:: 10.1093/med-psych/9780190647254.001.0001

Authors

Eric Kodish, editor Professor of Pediatrics, Cleveland Clinic Lerner College of Medicine, Case Western Reserve University

Robert M. Nelson, editor Senior Director of Pediatric Drug Development in the Child Health Innovation and Leadership Department (CHILD), Johnson & Johnson

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Front Matter
- Dedication
- Contributors
1 Ethics and Research with Children: Introduction to the Second EditionEric Kodish and Robert M. Nelson
2 Ethical Challenges Related to Participation of Adolescents and Young Adults with Intellectual Disability in ResearchPamela G. Nathanson, Theodore E. Schall, and Chris Feudtner
3 Ethical Challenges Conducting Pediatric Research in the Era of Scarce DrugsYoram Unguru
4 Catastrophically Ill Children, Access to Unregistered Medical Interventions, and Trial Recruitment Needs: An Ethical AnalysisThomas D. Hartvigsson and Udo Schuklenk
5 Ethical Issues in the Neonatal SUPPORT TrialJohn D. Lantos
6 Invasive Placebos, Patient Burdens, and Community Advocacy: A Federal Ethics Panel Protocol ReviewDonna L. Snyder, Catherine S. Lee, and Robert M. Nelson
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
8 The Welfare of Children, Research Ethics, and the Bucharest Early Intervention ProjectMaria G. Master and Joseph J. Fins
9 Ethical Issues in Genetic Research with Infants: Biospecimen Use and Genome SequencingErin Rothwell and Jeffrey R. Botkin
10 Recruitment and Parental Permission for Neonatal Clinical TrialsBenjamin S. Wilfond and Anita R. Shah
11 Communication and Decision-Making with Parents and Seriously Ill Children about Phase 1 Research TrialsMelissa K. Cousino, Wynne E. Morrison, and Victoria A. Miller
12 Involving Parents and Children in Community-Engaged Research: Ethical ConsiderationsErin Talati Paquette and Lainie Friedman Ross
13 Social Media and Pediatric Research RecruitmentLuke Gelinas and Jennifer C. Kesselheim
14 Payments for Participation of Children in ResearchDouglas S. Diekema
15 Clinical Innovations Near the Boundary of Viability—The Artificial WombRyan M. Antiel and Alan W. Flake
16 Ethics and Research with Children: Synthesis and Concluding ReflectionsRobert M. Nelson and Eric Kodish
End Matter
- About the Editors
- Index

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date: 01 July 2022

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