Main description:

Fundamental questions about the morality of pediatric medical research persist despite years of debate and the establishment of strict codes of ethics. Is it ever permissible to use a child as a means to an end? How much authority should parents have over decisions about research involving their children? Should children or their parents be paid for participation in research? Most importantly, how can the twin goals of access to the benefits of clinical research and
protection from research risk be reconciled?

Promoting more thoughtful attention to the complex ethical problems that arise when research involves children, this fully updated new edition of Ethics and Research with Children presents 14 case studies featuring some of the most challenging and fascinating ethical dilemmas in pediatric research. Each chapter begins with a unique case vignette, followed by rich discussion and incisive ethical analysis. Chapters represent a host of current controversies and are contributed by
leading scholars from a variety of disciplines that must grapple with how to best protect children from research risk while driving innovation in the fight against childhood diseases. Chapters end with questions for discussion, providing faculty and students with accessible starting points from which to explore
more in depth the thorny issues that are raised. In the final chapter, the editors provide a synthesis and summary that serve as a capstone and companion to the case-based chapters. Unique in its specific focus on research, Ethics and Research with Children provides a balanced and thorough account of the enduring dilemmas that arise when children become research subjects, and will be essential reading for those involved with pediatric research in any context.

Contents:

Chapter 1: Ethics and Research with Children: Introduction to the Second Edition
Eric Kodish and Robert M. Nelson

Chapter 2: Ethical Challenges Related to Participation of Adolescents and Young Adults with Intellectual Disability in Research
Pamela Nathanson, Theodore Schall, and Chris Feudtner

Chapter 3: Ethical Challenges Conducting Pediatric Research in the Era of Scarce Drugs
Yoram Unguru

Chapter 4: Catastrophically ill children, access to unregistered medical interventions and trial recruitment needs: an ethical analysis
Thomas Hartvigsson and Udo Schuklenk

Chapter 5: Ethical Issues in the Neonatal Surfactant, Positive Pressure and Oximetry Randomized Trial
John D. Lantos

Chapter 6: Invasive Placebos, Patient Burdens and Community Advocacy: A Federal Ethics Panel Protocol Review
Donna Snyder, Catherine Lee, Robert Nelson

Chapter 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, MD, PhD

Chapter 8: The Welfare of Children, Research Ethics and the Bucharest Early Intervention Project
Maria Master and Joseph Fins

Chapter 9: Ethical Issues in Genetic Research with Infants: Biospecimen Use and Genome Sequencing
Erin Rothwell and Jeffrey Botkin

Chapter 10: Parental Permission for Neonatal Clinical Trials
Benjamin Wilfond and Anita Shah

Chapter 11: Communication and Decision-Making with Parents and Seriously Ill Children about Phase 1 Research Trials
Melissa K. Cousino, Wynne E. Morrison, and Victoria A. Miller

Chapter 12: Involving Parents and Children in Community Engaged Research: Ethical Considerations
Erin Talati Paquette and Lainie Friedman Ross

Chapter 13: Social Media and Pediatric Research Recruitment
Luke Gelinas and Jennifer Cohn Kesselheim

Chapter 14: Payments for Participation of Children in Research
Douglas S. Diekema

Chapter 15: Clinical innovations near the boundary of viability - the artificial womb
Ryan Antiel and Alan W. Flake

Chapter 16: Synthesis and Concluding Reflections
Robert M. Nelson and Eric Kodish