In this edited volume, a diverse group of scholars present and discuss challenging cases in the field of pediatric research ethics. 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? What about economic incentives for doctors, researchers and the pharmaceutical industry? Most importantly, how can the twin goals of access to the benefits of clinical research and protection from research risk be reconciled? Following an introductory overview by editor Eric David Kodish, the book is divided into three sections of case studies: Research Involving Healthy Children, Research Involving At Risk Children, and Research Involving Children with Serious Illness. Each case raises compelling ethical issues, and the analysis presented in each chapter illuminate the challenges posed across a wide spectrum of both research protocols and stories of individual case-based approach, this book provides a balanced and through account of the enduring dilemmas that arise when children become research subjects.

1. Ethics and Research with Children, Eric Kodish Part I: Research Involving Healthy Children 2. Evaluating benefits and harms in research on healthy children, Paul Miller and Charles Weijer 3. Optimizing risk and benefit: The case of Rotavirus Vaccine, Susan Coffin and Robert M. Nelson 4. Prospects and perils in the regulation of community based research involving children, John Lantos and Molly Martin 5. Adolescent research and parental permission, Alan Fleischman and Lauren Collogan 6. Recruitment of pregnant, minor adolescents and minor adolescents at risk of pregnancy into longitudinal, observational research: The National Children's Study, John Santelli, Gail Geller, Donna T. Chen, Marjorie A Speers, Jeffrey R. Botkin, and Stacy Laswell Part II: Research Involving At-Risk Children 7. The ethics of newborn screening Diabetes research, Lainie Friedman Ross 8. Payments for participation of children in research, Douglas S. Diekema 9. Justice, lead and environmental research involving childre, Robert M. Nelson 10. Behavioral Research with Children: The Fenfluramine challenge, Gerald P. Koocher 11. The ethics of predictive genetic testing in prevention trials involving adolescents, Gail Geller Part III: Research Involving Children With Serious Illness 12. Research ethics and maternal fetal surgery, Rebecca Dresser 13. Testing drugs in developing countries: Pediatric research ethics in an international context, Michelle Eder 14. Research and innovation in pediatric surgery: The problem of Hypoplastic Left-heart Syndrome, Joel Frader and Erin Flanagan-Klygis 15. Near the boundary of research: Roles, responsibilites and resource allocation, Christopher Church, Victor M. Santana, Pamela S. Hinds, and Edwin M. Horowitz 16. Children and Placebos, Jessica Berg 17. When eligability and criteria clash with personal treatment choice: A dilemma of clinical research, Benjamin Wilfond and Fabio Candotti 18. Involving children in decisions about research and treatment for life shortening illness: A proposal for shuttle diplomacy and negotiation, Myra Bluebond-Langner, Amy DeCicco, and Jean Belasco Index

"The 18 cases selected demonstrate a remarkable range of clinical scenarios and ethical difficulties involving participants from the maternal/fetal dyad to neonate, young child, and adolescent." --IRB: Ethical and Human Research