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澳大利亚政策制定者如何在伦理方面对待人类 germline 基因组编辑技术。

How Australia's Policymakers Can Ethically Approach Human Germline Genome Editing Technology.

机构信息

Western Sydney University.

Senior Law Lecturer (PhD in Law, author of several articles on the regulation of innovative biotechnologies), Western Sydney University.

出版信息

J Law Med. 2022 Aug;29(3):740-759.

Abstract

This article undertakes an analysis of Australia's laws affecting human germline genome editing (HGGE). It draws on research from various ethical frameworks to analyse the values underpinning existing policy and which could underpin future approaches on HGGE. The article emphasises the importance of protecting egalitarianism, mitigating inequality risks, and ensuring stigmas around people with genetic conditions targeted by HGGE are not perpetuated. Doing so makes the philosophical case for a policy allowing HGGE for research use and considers the potential for limited clinical uses as we advance. The article recommends law reform in Australia in the form of an ongoing legislative review every three years, with the first review considering research and informed consent. The second considers appropriate clinical uses based on medical risk and what is agreed upon to be a list of considerations of a severe enough disease to be treated by HGGE. It gives examples of what the reform might look like, pending public engagement methodologies advocated. Finally, this article recommends considering ancillary legal issues raised by HGGE, including anti-discrimination and potential protections from liability.

摘要

本文对影响人类生殖系基因组编辑(HGGE)的澳大利亚法律进行了分析。它借鉴了各种伦理框架的研究,分析了现有政策所依据的价值观,以及未来 HGGE 方法所依据的价值观。本文强调了保护平等主义、减轻不平等风险以及确保不延续针对 HGGE 目标人群的遗传状况的污名的重要性。这样做从哲学上为允许 HGGE 用于研究用途的政策提供了依据,并考虑了随着我们的进步,有限的临床用途的可能性。本文建议澳大利亚进行法律改革,形式为每三年进行一次持续的立法审查,第一次审查考虑研究和知情同意。第二次审查根据医疗风险和一致认为的严重程度足以通过 HGGE 治疗的疾病的一系列考虑因素,考虑适当的临床用途。它给出了一些改革的例子,视公众参与方法的倡导而定。最后,本文建议考虑 HGGE 引发的辅助法律问题,包括反歧视和潜在的责任保护。

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