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bioethics Archives - Pediatric Ethicscope

The Use of Suffering in Pediatric Bioethics and Clinical Literature

The Use of Suffering in Pediatric Bioethics and Clinical Literature: A Qualitative Content Analysis

By | Articles, Peer-Reviewed Articles

“Suffering” is a concept that is frequently invoked in discussions about medical decision-making in pediatrics. However, empirical accounts of how the term is used are lacking, creating confusion about the concept and leaving parents and providers unsure about the appropriate ways to account for it in pediatric decision-making. We conducted a qualitative content analysis of pediatric bioethics and clinical literature in selected journals from 2007 to 2017 to determine how authors define and operationalize the term when referring to issues in pediatric treatment.

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Pediatric Ethicscope: Tomas Jose Silber, Leikin Lecture on Suffering main image: Chiron, Peleus, and Infant Achilles

Leikin Lecture: On Suffering

By | Articles, Peer-Reviewed Articles

So why is it that we clinicians are so often uneasy when talking about patient suffering? One simple explanation would be that, in our era of the most extraordinary scientific discoveries, this topic has been neglected because it is so profoundly subjective, impossible to measure, quantify or compare. I propose an additional explanation; entering the world of suffering compels a response that we are not sure we can deliver. Our doubts originate in shortcomings of the health care system itself, neglect by the educational system, and from the burden of our own suffering.

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Pediatric Ethicscope: the Journal of Pediatric Bioethics and Pediatric Ethics Evidence based Data driven medicine

Ethical Analysis of Normative Biases In Data-Driven Medicine

By | Articles, Peer-Reviewed Articles

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.

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editorial board member Pediatric Ethicscope: the Journal of Pediatric Bioethics and Pediatric Ethics

Considerations for Informed Consent in Clinical Trials Involving Neonates

By | Articles, Peer-Reviewed Articles

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).

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