基因组医疗保健中的伦理准备与发展
Ethical preparedness and developments in genomic healthcare.
作者信息
Farsides Bobbie, Lucassen Anneke M
机构信息
Clinical and Experimental Medicine, Brighton and Sussex Medical School, Brighton, UK
Clinical Ethics, Law and Society (CELS), Centre for Personalised Medicine, Wellcome Centre for Human Genetics, University of Oxford, Oxford, UK.
出版信息
J Med Ethics. 2025 Feb 21;51(3):213-218. doi: 10.1136/jme-2022-108528.
Abstract
Considerations of the notion of preparedness have come to the fore in the recent pandemic, highlighting a need to be better prepared to deal with sudden, unexpected and unwanted events. However, the concept of preparedness is also important in relation to planned for and desired interventions resulting from healthcare innovations. We describe ethical preparedness as a necessary component for the successful delivery of novel healthcare innovations, and use recent advances in genomic healthcare as an example. We suggest that practitioners and organisations charged with delivering innovative and ambitious healthcare programmes can only succeed if they are able to exhibit the attribute of ethical preparedness.
摘要
在最近的疫情中，对防范概念的考量已成为焦点，凸显了更充分准备以应对突发、意外和不良事件的必要性。然而，防范概念在医疗创新带来的计划性和期望性干预方面也很重要。我们将道德防范描述为成功实施新型医疗创新的必要组成部分，并以基因组医疗的最新进展为例。我们认为，负责实施创新且宏大医疗计划的从业者和组织只有展现出道德防范的特质才能取得成功。
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J Med Ethics. 2023 May;49(5):352-356. doi: 10.1136/medethics-2021-108102. Epub 2022 Jun 20.
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Writing the worlds of genomic medicine: experiences of using participatory-writing to understand life with rare conditions.书写基因组医学的世界：运用参与式写作理解罕见病患者生活的经验。
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Imagining genomic medicine futures in primary care: General practitioners' views on mainstreaming genomics in the National Health Service.想象初级保健中的基因组医学未来：全科医生对国民保健制度中基因组学主流化的看法。
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