Pediatric Ethics: Protecting the Interests of Children

Description

This book examines the many ethical issues related to health and health care in children. It describes the field of Pediatric ethics, a unique and important aspect of the discipline of bioethics, the study of moral conduct in health care and the rational process for determining the best course of action in the face of conflicting choices. The book begins with an exploration of what it means to be a child in America and the unique kinship relationships and obligations engendered by the decision of parents to have a child, and it examines ethical principles and professional obligations related to the care of children. Each of the chapters in the book focuses on important ethical concerns. It begins with ethical issues in creating babies using reproductive technologies, and then continues with an analysis of the ethical issues in labor and delivery of a child. The book continues with an in depth analysis of the many hard choices faced by families and clinicians in the care of critically ill neonates, and then goes on to describe current controversies in caring for older children who are dying and their families, as well as ethical issues concerning adolescents, research ethics as it relates to children, issues concerning genetic testing, screening and biobanking, and surgical and medical enhancement of children. Each chapter has case examples to illustrate the real life concerns of patients, families and clinicians. The book is intended for students in pediatrics and ethics, as well as for practicing clinicians, and interested families. Cover Titlepage Copyright Contents Acknowledgment 1. Children Are Special: Hard Questions, Hard Choices Pediatric Ethics Moral and Legal Status of Children in America The Book 2. Ethical Issues in Creating a Child Religious Perspectives on Creating Babies with Medical Assistance Ethical Issues in In Vitro Fertilization (IVF) 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 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 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 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 6. Ethical Issues at the End of Life: Caring for Gravely Ill Children Brain Death in Children Organ Donation After Circulatory Death Withholding Versus 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 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 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 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 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 That 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 Incentives, Compensation, Payment Compensation for Injury Special Populations Adolescents Neonates Economically or Educationally Disadvantaged Children Victims of Terror and Trauma Final Thoughts Additional Readings Index