Dianne Nicol, Margaret Otlowski, Keeley Reade, Natalie Thorne, Clara Gaff
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引用次数: 0
摘要
本节探讨了将基因组研究转化为基因组医学所面临的挑战。澳大利亚国家健康基因组学框架》(Australian National Health Genomics Framework)确定了应对这些挑战的若干优先事项。负责任地收集、存储、使用和管理基因组数据是这些优先事项之一,也是本节的主要主题。本节以最近发布的澳大利亚数据共享平台 Genomical 为案例,说明可为医疗保健部门提供哪些类型的援助,以解决这一优先事项。本节首先介绍了《国家框架》和其他推动基因组医学发展的因素。然后,本节探讨了基因组学中的关键伦理、法律和社会因素,尤其关注隐私和同意问题。最后,本节探讨了如何利用 Genomical 来帮助确保基因组医学的发展在伦理、法律和社会方面都是合理的,并能优化基因组和信息技术的进步。
Moving Genomics into the Clinic: Platforms for Implementing Clinical Genomic Data-Sharing in Ways That Address Ethical, Legal and Social Implications.
This section explores the challenges involved in translating genomic research into genomic medicine. A number of priorities have been identified in the Australian National Health Genomics Framework for addressing these challenges. Responsible collection, storage, use and management of genomic data is one of these priorities, and is the primary theme of this section. The recent release of Genomical, an Australian data-sharing platform, is used as a case study to illustrate the type of assistance that can be provided to the health care sector in addressing this priority. The section first describes the National Framework and other drivers involved in the move towards genomic medicine. The section then examines key ethical, legal and social factors at play in genomics, with particular focus on privacy and consent. Finally, the section examines how Genomical is being used to help ensure that the move towards genomic medicine is ethically, legally and socially sound and that it optimises advances in both genomic and information technology.