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A journal devoted to pediatric bioethics
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In Press
Winter 2019;32(2)
Editorial volume 21 number 2: We have introduced a number of new elements to the Pediatric Ethicscope website over the past several weeks. These changes were prompted by several requests from readers, and most of the changes are aimed at aiding readers wanting to cite and download Pediatric Ethicscope articles for research or teaching purposes. About the cover; about the articles.
Disengagement and non-adherence of an adolescent with chronic disease potentially leading to life-threatening complications is a common and distressing challenge encountered by pediatricians. Most clinicians intuitively focus on balancing the patient’s emerging autonomy with beneficence and non-maleficence. We believe ‘good care’ may be better understood through the lens of care ethics.
Current Issue
Spring 2019;32(1)
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Overview of volume 32 issue number 1: Informed consent in neonatal clinical trials, home medical care, biases is data-driven medicine, patient worldviews, moral courage, and physician shadowing.
Ethical Analysis of Normative Biases In Data-Driven Medicine
Information technology in the 21st century has resulted in physicians coming to rely on data. However, when clinicians are conditioned to rely on data and suppress clinical judgment, it becomes difficult to manage rare conditions where data is not available. The following discussion recounts one family’s experience with clinical counseling on a rare diagnosis and highlights these issues.
Considerations for Informed Consent in Clinical Trials Involving Neonates
Conducting clinical research in newborns requires special protections due to the high vulnerability of this patient population and their parents. This paper presents guidance developed by a multidisciplinary group of bioethicists and patient advocates considering patient- and parent-centric approaches to informed consent in neonatal research in the context of an ongoing clinical trial for neonates with spinal muscular atrophy (SMA).
Medical Complexity Leading to Foster Care
Pediatric patients who require medical care that is beyond the ability of their family to administer and/or maintain poses numerous ethical questions. Assuming the best interests of the child necessarily compel foster placement, what practical and ethical issues remain?
Empathy and the Divide Between Medical and Patient/Family Worldviews
A lack of empathy while standing in as a translator for another physician's patient and family raised the following question: can one be culturally insensitive to one's own culture? The following narrative explores the divide between medical and patient/family worldviews.
A nurse recounts her experience as a new NICU nurse raising an issue about the appropriateness of a procedure with the rest of the medical team. The narrative addresses issues of power imbalance, ethical controversy, medical decision-making, and moral distress.
Clinical and Surgical Shadowing: A First-Person Account and Ethical Analysis
Shadowing has become, if not an explicit requirement, important for medical school admission. Shadowing has come under criticism for undermining bioethical principles such as patient autonomy and privacy. Critics argue the practice of shadowing violates the physician's fiduciary duty to the patient. These criticisms are largely based either theoretical concerns or anecdote. This account reviews the criticisms of shadowing and assesses the claims.
Ethics Consult Report: Withdrawal of Artificial Nutrition and Hydration
A medical team considers withdrawal of artificial nutrition and hydration supporting a 6-month-old girl with complex cardiac disease, devastating neurological injury, and ongoing, unmanageable pain. Diffuse neurological injury and severe ischemia in all four limbs offers a bleak prognosis. Drawing on the bioethics literature on the subject, the following case presentation and analysis illustrates how a medical team and family can approach such a situation.
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Ethical issues in Genetics Research Children are important participants in genetics research, and in genetics research involving children, IRBs must address the primary issues of privacy, confidentiality, informed consent, and the return of results. (14)
Ethical Analysis of Normative Biases In Data-Driven Medicine Information technology in the 21st century has resulted in physicians coming to rely on data. However, when clinicians are conditioned to rely on data and suppress clinical judgment, it becomes difficult to manage rare conditions… (4)
Dialogue with the Ethicist: Chris Feudtner MD, PhD Chris Feudtner MD, PhD, MPH delivered the Sanford L. Leikin Memorial Lecture in Pediatric Ethics at Children’s National Medical Center. Here he discuses a case brought by one of the hospital units. (3)
When Parents and Providers Disagree Conflicts between parents and health care providers are among the most common of the ethical issues encountered in pediatrics. In this article, three cases are presented along with an ethical framework for thinking about cases… (3)
Ethics Education: Harvard Clinical Bioethics Course The annual Harvard Clinical Bioethics Course at the Harvard Medical School in Boston; a three-day conference of nearly thirty hours of lectures, discussion groups, working lunches, and even a play. (3)