Children like Baby G, born with complex chronic medical conditions that compromise function in the long term, are an increasing presence in tertiary-level neonatal intensive care units. The parents and health-care providers of these children are faced with profoundly difficult decisions. Whether severe congenital anomalies with poor prognosis are diagnosed antenatally or are discovered at the time of birth, the issues are vexing, and the impact decisions will have on everyone in the family is profound. What should such decisions be (...) based upon? What values and principles might guide the decision-making process? What moral justifications allow for pursuing.. (shrink)

In this article, we examine how the U.N. Convention on the Rights of the Child can be useful in pediatric bioethics. Adopted in 1989, the CRC reflects norms that have been deliberated upon for a long period of time and endorsed by most nations. The United States is now the only country that has not ratified the CRC.1 International human rights law shares many key moral concepts with clinical pediatric bioethics, and the CRC provides a considered language common to many (...) jurisdictions that can assist bioethicists in their daily practice and help health-care organizations in their policy development and international interactions. There may, however, be practical challenges with using the CRC in the practice of.. (shrink)

The explicit objective for the 2014 Symposium hosted by the University of North Florida, which serves as the basis for this collection of papers, was to explore the relationship and potential for mutual support between the disciplines of child rights and pediatric bioethics in advancing the health and well-being of children in the United States and around the world. The U.N. Convention on the Rights of the Child served as the locus for this discussion. A significant question emerged in the (...) Symposium about whether the CRC could serve any beneficial purpose in the United States, where it has not yet been ratified. Further, there was.. (shrink)

The manuscripts in this issue of Perspectives in Biology and Medicine reflect the work of an international group of pediatric bioethicists and child rights advocates who convened in March 2014 to pursue several questions related to the intersection of pediatric bioethics and child rights. The prequel for the Symposium involved several years of dialogue between the editors of this volume—dialogue through which it became clear that there was much to be learned about our respective disciplines and how they might inform (...) our heretofore mutually exclusive work.The principles of pediatric bioethics have been used for decades to analyze and help resolve challenging clinical situations in pediatrics, but there has been.. (shrink)

Born at 24 weeks gestation, Baby G now lies in a neonatal intensive care unit two months post-birth. He has pulmonary hypoplasia, congenital scoliosis, and swallowing issues that will require placement of a feeding tube, and bowel dystonia that interferes with his ability to absorb feedings. Shortly after birth, he experienced a cardiopulmonary arrest and now has obvious neurological impairments. As a result of incomplete development of his lungs and severe chronic lung disease, he cannot breathe on his own. Because (...) of his chronic respiratory failure, tracheostomy and long-term assisted ventilation was offered as an option that would allow him to be discharged from the acute care setting. However, his congenital.. (shrink)