关键词: consent data-sharing ethics genomic data genomics privacy research

Mesh : Humans Genomics / legislation & jurisprudence ethics Australia Information Dissemination / legislation & jurisprudence ethics Informed Consent / legislation & jurisprudence Genetic Privacy / legislation & jurisprudence Confidentiality / legislation & jurisprudence

来  源:   DOI:

Abstract:
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.
摘要:
本节探讨了将基因组研究转化为基因组医学所涉及的挑战。在澳大利亚国家健康基因组学框架中已经确定了许多优先事项来应对这些挑战。负责收集,storage,基因组数据的使用和管理是这些优先事项之一,是本节的主要主题。最近发布的Genomical,澳大利亚的数据共享平台,被用作案例研究,以说明在解决这一优先事项时可以向卫生保健部门提供的援助类型。本节首先介绍了国家框架和其他涉及基因组医学发展的驱动因素。然后,本节将检查关键的道德,基因组学中的法律和社会因素,特别关注隐私和同意。最后,该部分检查了如何使用Genomical来帮助确保向基因组医学的转变是道德上的,在法律和社会上都是合理的,它优化了基因组和信息技术的进步。
公众号