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.

Chapter 1: Ethics and Research with Children: Introduction to the Second EditionEric Kodish and Robert M. NelsonChapter 2: Ethical Challenges Related to Participation of Adolescents and Young Adults with Intellectual Disability in ResearchPamela Nathanson, Theodore Schall, and Chris FeudtnerChapter 3: Ethical Challenges Conducting Pediatric Research in the Era of Scarce DrugsYoram UnguruChapter 4: Catastrophically ill children, access to unregistered medical interventions and trial recruitment needs: an ethical analysisThomas Hartvigsson and Udo SchuklenkChapter 5: Ethical Issues in the Neonatal Surfactant, Positive Pressure and Oximetry Randomized TrialJohn D. LantosChapter 6: Invasive Placebos, Patient Burdens and Community Advocacy: A Federal Ethics Panel Protocol ReviewDonna Snyder, Catherine Lee, Robert NelsonChapter 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, PhDChapter 8: The Welfare of Children, Research Ethics and the Bucharest Early Intervention ProjectMaria Master and Joseph FinsChapter 9: Ethical Issues in Genetic Research with Infants: Biospecimen Use and Genome SequencingErin Rothwell and Jeffrey BotkinChapter 10: Parental Permission for Neonatal Clinical TrialsBenjamin Wilfond and Anita ShahChapter 11: Communication and Decision-Making with Parents and Seriously Ill Children about Phase 1 Research TrialsMelissa K. Cousino, Wynne E. Morrison, and Victoria A. MillerChapter 12: Involving Parents and Children in Community Engaged Research: Ethical ConsiderationsErin Talati Paquette and Lainie Friedman RossChapter 13: Social Media and Pediatric Research RecruitmentLuke Gelinas and Jennifer Cohn KesselheimChapter 14: Payments for Participation of Children in ResearchDouglas S. DiekemaChapter 15: Clinical innovations near the boundary of viability - the artificial wombRyan Antiel and Alan W. FlakeChapter 16: Synthesis and Concluding ReflectionsRobert M. Nelson and Eric Kodish