Pediatric Ethics

Alan R. Fleischman, M.D. is Professor of Clinical Pediatrics and Professor of Clinical Epidemiology and Population Health at the Albert Einstein College of Medicine in New York.In the academic area, he has been a pioneer in the fields of bioethics and research ethics. This work has resulted in over one hundred sixty publications in peer reviewed journals and book chapters, including a book edited with Robert Cassidy, entitled "Pediatric Ethics--From Principles to Practice," published by Harwood Press. In addition, Dr. Fleischman has been a consultant to several federal agencies including National Institutes of Health, Environmental Protection Agency, Food and Drug Administration, and Center for Disease Control and Prevention. He is an elected Fellow and a member of the Board of Directors of the Hastings Center and an elected Fellow of the New York Academy of Medicine.

• Chapter 1 Children are Special: Hard Questions, Hard Choices Pediatric Ethics Moral and Legal Status of Children in America The Book Chapter 2 Ethical Issues in Creating a Child Religious Perspectives on Medical Assistance with Creating Babies Ethical Issues in In Vitro Fertilization Research in IVF Cost and Commercialization of IVF Clinician Choice of Patients for IVF Gamete Donation Gamete Storage and Disposition Embryos Preimplantation Genetic Diagnosis Gestational Surrogacy Final Thoughts Additional Readings Chapter 3 Ethical Issues in Giving Birth to a Baby Term Delivery Preterm Delivery The Threshold of Viability Late Preterm Delivery Do Not Resuscitate Orders in the Delivery Room Maternal Catastrophe and Brain Death Behaviors during Pregnancy that Jeopardize the Fetus Final Thoughts Additional Readings Chapter 4 Ethical Issues in Neonatal Intensive Care A Brief History of Decision Making for Critically Ill Neonates Infant Bioethics Committees Ethical Analysis in Neonatal Intensive Care The "Window of Opportunity" Is Neonatal Care "Experimental?" Cost and Neonatal Care Final Thoughts Additional Readings Chapter 5 Ethical Issues in Genetic Testing and Screening in Children Background Genetic Testing and Screening Genetic Exceptionalism Genetic Screening-Unique Issues in Children Screening for Adult-Onset Diseases Newborn Screening Newborn Screening - Use of Residual Blood Spots Newborn Screening - Future Directions Biobanking Biobank Institutional Review Boards Biobank-Informed Consent Biobank -- Revealing Research Findings Whole Genome or Exome Sequencing Final Thoughts Additional Readings Chapter 6 Ethical Issues at the End of Life: Caring for Gravely Ill Children Brain Death in Children Organ Donation after Circulatory Death Withholding vs Withdrawal of Treatment Medically Provided Nutrition and Hydration Pain Management at the End of Life Children as Participants in Planning Care Care of a Dying Child Supporting the Family after the Death of a Child Additional Readings Chapter 7 Ethical Issues in General Pediatric Practice Parental Refusal of Routine Immunizations Reporting Suspected Child Abuse and Neglect Physician Refusal to Provide Requested Tests or Treatments Physicians as Employees Relationships with Public and Private Insurers Relationships with Industry Final Thoughts Additional Readings Chapter 8 Ethical Issues in the Care of Adolescents Adolescent Decision Making Confidentiality The Adolescent Alone Homosexual and Transgender Issues Mental Illness, Depression, and Suicide Eating Disorders Final Thoughts Additional Readings Chapter 9 Ethical Issues in Medical and Surgical Enhancement Medical Enhancement Growth Hormone for Idiopathic Short Stature Growth Attenuation in Children with Profound Developmental Disabilities Psychotropic Drugs Embryo Selection and Genetic Engineering Surgical Enhancement Plastic Surgery in Down Syndrome Limb Lengthening Surgery for Dwarfism Final Thoughts Additional Readings Chapter 10 Ethical Issues in Research Involving Children Historical Background The National Commission for the Protection of Subjects of Research U.S. Federal Regulations Regarding Research with Children Research not Involving Greater than Minimal Risk Research Involving Greater than Minimal Risk but Presenting the Prospect of Direct Benefit to the Individual Subjects Research Involving Greater than Minimal Risk and no Prospect of Direct Benefit to Individual Subjects, But Likely to Yield Generalizable Knowledge about the Subject's Disorder or Condition Research not Otherwise Approvable which Presents an Opportunity to Understand, Prevent, or Alleviate a Serious Problem Affecting the Health and Welfare of Children Minimizing Risk Parental (or Guardian) Permission and Child Assent Wards Compensation for Injury Special Populations Adolescents Neonates Economically or Educationally Disadvantaged Children Victims of Terror and Trauma Final Thoughts Additional Readings Index

"This book is a cogent and nuanced analysis of the plethora of ethical issues in the continuum of perinatal, neonatal, pediatric and adolescent care. The cases in each chapter beautifully illustrate the complexity of ethical challenges faced by both parents and clinicians. It is a valuable resource for nurses and all members of the health care team who struggle to do the right thing under complex and challenging circumstances. Similarly, parents who areconfronted with "being a good parent" under conditions of uncertainty and confusion will find wise insights into the inner workings of medical decision making."- Cynda Hylton Rushton PhD, RN, FAAN,Bunting Professor of Clinical Ethics, Professor of Nursing and Pediatrics, Johns Hopkins University