主张人类基因组数据所有权的智慧:研究机构的警示故事。

Pub Date : 2024-01-31 DOI:10.1111/dewb.12443
Donrich Thaldar
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引用次数: 0

摘要

本文探讨的实际问题是,研究机构应如何以最佳方式构建与其生成的人类基因组数据之间的法律关系。分析以南非法律为基础,其法律立场是,虽然产生人类基因组数据的研究机构并不自动拥有这些数据,但它完全有能力主张对新产生的数据实例的所有权。鉴于研究机构为生成数据付出了努力,可以说它在道义上有权主张对这些数据的所有权。再加上研究机构希望对这些数据拥有全面的权利,因此研究机构的审慎政策似乎是要求对其生成的人类基因组数据实例拥有所有权。这一政策要接受两种对立政策立场的检验。第一个对立的政策立场是,研究参与者应拥有与其相关的数据。然而,鉴于数据保护法已经为研究参与者提供了广泛的保护,赋予研究参与者数据所有权对这些人来说好处甚微,同时也会给研究机构带来严重的实际问题。第二种对立的政策立场是,应放弃所有权概念,转而采用数据监护权。这一反对立场是有问题的,因为避免提及所有权是对法律现实的否定,因此不是一项有用的政策。此外,避免提及所有权会使研究机构在数据被第三方盗用时只能获得有限的法律补救。因此,结论是研究机构最明智的政策确实是明确主张对其生成的人类基因组数据实例的所有权。
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The wisdom of claiming ownership of human genomic data: A cautionary tale for research institutions.

This article considers the practical question of how research institutions should best structure their legal relationship with the human genomic data that they generate. The analysis, based on South African law, is framed by the legal position that although a research institution that generates human genomic data is not automatically the owner thereof, it is well positioned to claim ownership of newly generated data instances. Given that the research institution exerts effort to generate the data, it can be argued that it has a moral right to claim ownership of such data. Combined with the fact that it has an interest in having comprehensive rights in such data, it appears that the prudent policy for research institutions is to claim ownership of the human genomic data instances that they generate. This policy is tested against two opposing policy positions. The first opposing policy position is that research participants should own the data that relate to them. However, in light of data protection legislation that already provides extensive protections to research participants, bestowing data ownership on research participants would offer little benefit to such individuals, while leading to significant practical problems for research institutions. The second opposing policy position is that the concept of ownership should be abandoned in favour of data custodianship. This opposing position is problematic, as avoiding reference to ownership is a denial of legal reality and hence not a useful policy. Also, avoiding reference to ownership will leave research institutions with limited legal remedies in the event of appropriation of data by third parties. Accordingly, it is concluded that the wisest policy for research institutions is indeed to explicitly claim ownership of the human genomic data instances that they generate.

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