Ethics and Research with Children (eBook, PDF)

A Case-Based Approach
Redaktion: Kodish, Eric; Nelson, Robert M.

• Format: PDF

Produktbeschreibung

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.

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Produktdetails

• Verlag: Oxford University Press
• Seitenzahl: 408
• Erscheinungstermin: 26. November 2018
• Englisch
• ISBN-13: 9780190647261
• Artikelnr.: 54582225

Autorenporträt

Eric Kodish, MD is Professor of Pediatrics at the Lerner College of Medicine, Cleveland Clinic. Robert M. Nelson, MD, PhD is Senior Director of Pediatric Drug Development in the Child Health Innovation and Leadership Department (CHILD), Johnson & Johnson.

Inhaltsangabe

* 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