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开放科学与人类遗传数据:关于南非的建议

Open science and human genetic data: recommendations on South Africa's .

作者信息

Thaldar Donrich, Gooden Amy, Steytler Michaela

机构信息

School of Law, University of KwaZulu-Natal, Durban, South Africa.

Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School, Cambridge, MA, United States.

出版信息

Front Genet. 2023 Oct 2;14:1248747. doi: 10.3389/fgene.2023.1248747. eCollection 2023.

Abstract

The , which was shared by the South African government with stakeholders in 2022, is an encouraging step forward as it aims to promote the practice of open science in South Africa through a system of incentives. Since South Africa is constitutionally committed to be an open and democratic society, this approach is preferable to the approach of state control that characterizes the -another data-related policy initiative by the South African government. However, there is room for improvement in the . In particular, it should: (a) rely on the right to freedom of scientific research to strengthen the policy; (b) rectify the omission of ownership from its policy analysis; and (c) retain a clear differentiation between human and non-human genetic data. This will ensure that the final policy is clearly anchored in the South African Constitution, and that the principle of "as open as possible, as closed as necessary" can be applied to human genetic data in a legally well informed and accountable way.

摘要

南非政府于2022年与利益相关者分享的[具体内容未给出]是向前迈出的鼓舞人心的一步,因为它旨在通过激励机制促进南非开放科学的实践。由于南非在宪法上致力于成为一个开放和民主的社会,这种方法比以国家控制为特征的方法更可取,而后者是南非政府另一项与数据相关的政策倡议的特点。然而,[具体内容未给出]仍有改进空间。特别是,它应该:(a) 依靠科学研究自由权来加强该政策;(b) 纠正其政策分析中对所有权的遗漏;(c) 明确区分人类和非人类基因数据。这将确保最终政策明确以南非宪法为依据,并且“尽可能开放,必要时封闭”的原则能够以法律上明智且可问责的方式应用于人类基因数据。

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Open science and human genetic data: recommendations on South Africa's .开放科学与人类遗传数据:关于南非的建议
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引用本文的文献

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Social justice and research using human biological material: A response to Mahomed, Nöthling-Slabbert and Pepper.
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