儿科精准医学时代的知情同意伦理框架。
Ethical frameworks of informed consent in the age of pediatric precision medicine.
作者信息
Chen David
机构信息
Temerty Faculty of Medicine, University of Toronto, Toronto, ON, Canada.
Department of Medical Oncology, Dana Farber Cancer Institute, Boston, MA, USA.
出版信息
Camb Prism Precis Med. 2024 May 6;2:e6. doi: 10.1017/pcm.2024.3. eCollection 2024.
Precision medicine is an emergent medical paradigm that uses information technology to inform the use of targeted therapies and treatments. One of the first steps of precision medicine involves acquiring the patient's informed consent to protect their rights to autonomous medical decision-making. In pediatrics, there exists mixed recommendations and guidelines of consent-related practices designed to safeguard pediatric patient interests while protecting their autonomy. Here, we provide a high-level, clinical primer of (1) ethical informed consent frameworks widely used in clinical practice and (2) promising modern adaptations to improve informed consent practices in pediatric precision medicine. Given the rapid scientific advances and adoption of precision medicine, we highlight the dual need to both consider the clinical implementation of consent in pediatric precision medicine workflows as well as build rapport with pediatric patients and their substitute decision-makers working alongside interdisciplinary health teams.
精准医学是一种新兴的医学模式，它利用信息技术来指导靶向治疗和疗法的使用。精准医学的首要步骤之一是获得患者的知情同意，以保护他们自主进行医疗决策的权利。在儿科领域，存在着旨在保护儿科患者利益同时维护其自主权的关于同意相关做法的混合建议和指南。在此，我们提供一份高层次的临床入门指南，内容包括：（1）临床实践中广泛使用的伦理知情同意框架，以及（2）有望改进儿科精准医学知情同意实践的现代适应性方法。鉴于精准医学的科学进展迅速且应用广泛，我们强调了双重需求，既要考虑在儿科精准医学工作流程中临床实施同意的问题，也要与儿科患者及其替代决策者建立融洽关系，他们与跨学科医疗团队协同工作。
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