Full 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.
Contents
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
