Bioethics and Medical Ethics Commons^™

Genomic Contraindications For Heart Transplantation., Danton S. Char, Gabriel Lázaro-Muñoz, Aliessa Barnes, David Magnus, Michael J. Deem, John Lantos

Manuscripts, Articles, Book Chapters and Other Papers

Genome sequencing raises new ethical challenges. Decoding the genome produces new forms of diagnostic and prognostic information; however, the information is often difficult to interpret. The connection between most genetic variants and their phenotypic manifestations is not understood. This scenario is particularly true for disorders that are not associated with an autosomal genetic variant. The analytic uncertainty is compounded by moral uncertainty about how, exactly, the results of genomic testing should influence clinical decisions. In this Ethics Rounds, we present a case in which genomic findings seemed to play a role in deciding whether a patient was to be listed …

Children’S Exposure To Environmental Toxins: Socioeconomic Factors And Subsequent Effects On Mental Health And Function, Dorothy L. Mcleod

Center for the Human Rights of Children

The physical environment in which children live, including the air they breathe and the water they drink, has a profound influence on their development. While children need many chemicals and nutrients to physically grow and develop normally, others, such as those deemed environmental toxins (e.g. pesticides, lead, mercury, and illicit substances) act instead as a threat to healthy development. These chemicals may have highly toxic effects, and while they are a threat to all individuals, they affect infants and children most severely. In order to provide an introduction to the issue of toxin exposure and mental health outcomes, to highlight …

Ethical Concerns When Minors Act As Standardized Patients., Erwin Jiayuan Khoo, Robert Schremmer, Douglas S. Diekema, John Lantos

Manuscripts, Articles, Book Chapters and Other Papers

When minors are asked to assist medical educators by acting as standardized patients (SPs), there is a potential for the minors to be exploited. Minors deserve protection from exploitation. Such protection has been written into regulations governing medical research and into child labor laws. But there are no similar guidelines for minors' work in medical education. This article addresses the question of whether there should be rules. Should minors be required to give their informed consent or assent? Are there certain practices that could cause harm for the children who become SPs? We present a controversial case and ask a …

Medical Therapy For Inappropriate Sexual Behaviors In A Teen With Autism Spectrum Disorder., Loyal Coshway, Julia Broussard, Kruti Acharya, Karen Fried, Michael E. Msall, John Lantos, Leena Nahata

Manuscripts, Articles, Book Chapters and Other Papers

Teens with autism spectrum disorder often exhibit sexual behaviors in public that are disturbing to parents, teachers, and peers. Some have proposed that such behaviors can be curtailed with hormonal suppression. There is information on the Internet suggesting that such medications work, and some reports in the peer-reviewed medical literature support these claims. Such medications can have serious side effects. In this paper, we present a case in which parents requested such treatment of their teenage son with autism spectrum disorder.

Is Whole-Exome Sequencing An Ethically Disruptive Technology? Perspectives Of Pediatric Oncologists And Parents Of Pediatric Patients With Solid Tumors, Laurence B Mccullough, Melody J Slashinski, Amy L Mcguire, Richard L Street, Christine M Eng, Richard A Gibbs, D William Parsons, Sharon E Plon

Faculty, Staff and Students Publications

BACKGROUND: It has been anticipated that physician and parents will be ill prepared or unprepared for the clinical introduction of genome sequencing, making it ethically disruptive.

PROCEDURE: As a part of the Baylor Advancing Sequencing in Childhood Cancer Care study, we conducted semistructured interviews with 16 pediatric oncologists and 40 parents of pediatric patients with cancer prior to the return of sequencing results. We elicited expectations and attitudes concerning the impact of sequencing on clinical decision making, clinical utility, and treatment expectations from both groups. Using accepted methods of qualitative research to analyze interview transcripts, we completed a thematic analysis …

Introduction To Bioethics Special Supplement V: Ethical Issues In Genomic Testing Of Children., John D. Lantos

Manuscripts, Articles, Book Chapters and Other Papers

Next-generation genome sequencing of children is one of the most promising and most challenging new technologies in pediatrics. On the one hand, it offers the hope that we will be able to diagnose rare conditions that were previously impossible to diagnose, which, in turn, might lead to new treatments. On the other hand, the technology for sequencing presents daunting problems of interpretation. It is problematic to conduct the research necessary to characterize the pathogenicity of those variants at the same time that we are using them to guide the clinical care of children who have complex medical problems. It is …

Please Do Whatever It Takes To End Our Daughter's Suffering!, Stéphan Clément De Cléty, Marie Friedel, A A Eduard Verhagen, John D. Lantos, Brian S. Carter

Manuscripts, Articles, Book Chapters and Other Papers

What is the best way to care for a child with severe neurologic impairment who seems to be dying and is in intractable pain? Can we give sedation as we remove life support? Is it ethically permissible to hasten death? In the United States, 5 states have legalized assisted suicide (although only for competent adults). In Belgium and the Netherlands, euthanasia is legal for children under some circumstances. We present a case in which parents and doctors face difficult decisions about palliative care. Experts from Belgium, the Netherlands, and the United States then discuss how they would respond to such …

Identification Of Factors Associated With Good Response To Growth Hormone Therapy In Children With Short Stature: Results From The Answer Program®., Peter A Lee, John Germak, Robert Gut, Naum Khutoryansky, Judith Ross

Department of Pediatrics Faculty Papers

UNLABELLED: ABSTRACT:

OBJECTIVE: To identify factors associated with growth in children on growth hormone (GH) therapy using data from the American Norditropin Studies: Web-enabled Research (ANSWER) Program® registry.

METHODS: GH-naïve children with GH deficiency, multiple pituitary hormone deficiency, idiopathic short stature, Turner syndrome, or a history of small for gestational age were eligible (N = 1,002). Using a longitudinal statistical approach, predictive factors were identified in patients with GHD for change from baseline in height standard deviation score (ΔHSDS) following 2 years of treatment.

RESULTS: Gradual increases in ΔHSDS over time were observed for all diagnostic categories. Significant predictive factors …

Periodic Fever, Aphthous Stomatitis, Pharyngitis, And Adenitis (Pfapa) Is A Disorder Of Innate Immunity And Th1 Activation Responsive To Il-1 Blockade., Silvia Stojanov, Sivia Lapidus, Puja Chitkara, Henry Feder, Juan C Salazar, Thomas A Fleisher, Margaret R Brown, Kathryn M Edwards, Michael M Ward, Robert A Colbert, Hong-Wei Sun, Geryl M Wood, Beverly K Barham, Anne Jones, Ivona Aksentijevich, Raphaela Goldbach-Mansky, Balu Athreya, Karyl S Barron, Daniel L Kastner

Department of Pediatrics Faculty Papers

The syndrome of periodic fever, aphthous stomatitis, pharyngitis, and cervical adenitis (PFAPA) is the most common periodic fever disease in children. However, the pathogenesis is unknown. Using a systems biology approach we analyzed blood samples from PFAPA patients whose genetic testing excluded hereditary periodic fevers (HPFs), and from healthy children and pediatric HPF patients. Gene expression profiling could clearly distinguish PFAPA flares from asymptomatic intervals, HPF flares, and healthy controls. During PFAPA attacks, complement (C1QB, C2, SERPING1), IL-1-related (IL-1B, IL-1RN, CASP1, IL18RAP), and IFN-induced (AIM2, IP-10/CXCL10) genes were significantly overexpressed, but T cell-associated transcripts (CD3, CD8B) were down-regulated. On the …

Continuous Source Of Care Among Young Underserved Children: Associated Characteristics And Use Of Recommended Parenting Practices., Esther K Chung, Leny Mathew, Kelly F Mccollum, Irma T Elo, Jennifer F Culhane

Department of Pediatrics Faculty Papers

OBJECTIVES: The aim of this study was to 1) assess sociodemographic and health characteristics associated with having a continuous source of care (CSOC) among young children and 2) determine the relationship between having a CSOC and use of parenting practices.

METHODS: We conducted a prospective, community-based survey of women receiving prenatal care at Philadelphia community health centers. We conducted surveys at the first prenatal visit and at a mean age +/- standard deviation of 3 +/-1, 11 +/- 1, and 24 +/- 2 months postpartum, obtaining information on sociodemographic and health characteristics, child's health care provider, and 6 parenting practices. …

A Clustering Of Childhood Meningococcal Disease: A Challenge For Physicians, Press And Community., Michael S. Dreyer, Stephen C. Eppes, Joel D. Klein

Department of Pediatrics Faculty Papers

The Delaware Division of Public Health reported only two cases of documented meningococcal infection in the pediatric population in 1992. As of March 1, 1993, the Morbidity and Mortality Weekly Report indicated only one case of meningococcal disease in the state of Delaware for 1993. However, from the end of February to early April 1993, approximately six weeks, there were seven cases of documented meningococcal infection in the pediatric population that either presented or were transferred to one of the pediatric care facilities in the Wilmington, Delaware area. Notification of these cases to the Delaware Division of Public Health prompted …

Ochrobactrum Anthropi Bacteremia In A Child., Joel D. Klein, Stephen C. Eppes

Department of Pediatrics Faculty Papers

Children undergoing chemotherapy for cancer are at increased risk of supervening infection, including bacteremia. This may be due to immunosuppression as well as the presence of intravascular devices such as central venous catheters. Bacteria responsible for these infections include those found in the child's endogenous flora as well as in environmental sources. We report the case of a child with acute lymphoblastic leukemia (ALL) who developed bacteremia secondary to Ochrobactrum anthropi. Details of this extremely rare infection are the focus of this report.

Malignant External Otitis And Mastoiditis Associated With An Igg4 Subclass Deficiency In A Child., Ricardo Castro, Md, Norman Robinson, Md, Joel Klein, Md, William Geimeier, Md

Department of Pediatrics Faculty Papers

We have presented the first child in Delaware with malignant external otitis associated with IgG4 deficiency. Our patient needed three courses of intravenous antibiotics and twice required mastoidectomy, but has recovered completely following the restoration of the natural barrier between the internal and external ear, using a fascial graft from the large temporalis muscle. Some hearing deficit remains.

Recurrent/Persistent Pneumonia In A 3 1/2-Year-Old-Girl Due To Acquired Immune Deficiency Syndrome., Ricardo Castro, Md, Joel Klein, Md, Rajeswary Padmalingam, Md, Stephen C. Eppes, Md

Department of Pediatrics Faculty Papers

The following is the report of the first case of a Delaware born child who developed AIDS, born from a mother who was not in a high risk camp.

Animal Bite Infections., Joel D. Klein, Md

Department of Pediatrics Faculty Papers

Animal bites have become alarmingly common and may represent a quiet epidemic. It is estimated that between 1 and 3.5 million animal bites occur annually in the United States. The highest incidence has consistently been in 5-to-14-year-old schoolchildren, who have greater contact with animals, especially house pets, on a daily basis. This article discusses the epidemiology, microbiology, clinical findings and management of animal bites infections.