A human rights approach to an international code of conduct for genomic and clinical data sharing
A human rights approach to an international code of conduct for genomic and clinical data sharing
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DOI：
10.1007/s00439-014-1432-6
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发表时间：
2014-07-01
期刊：
影响因子：
5.3
通讯作者：
Dove, Edward S.
中科院分区：
文献类型：
--
作者：
Knoppers, Bartha M.;Harris, Jennifer R.;Dove, Edward S.
促进数据共享是科学和伦理上的当务之急。通过将来自传统上孤立的学科和地理区域的信息丰富的大型数据集结合起来，可以更全面、更快速地实现卫生成果。虽然决策者和国际生物医学界越来越多地接受数据共享合作，但我们缺乏一个共同的伦理和法律框架来连接监管机构、资助者、联盟和研究项目，从而促进基因组和临床数据的联系、全球科学合作和负责任的研究行为。治理工具可用于负责任地引导数据共享，以便对研究发现、基因组学研究资源及其临床应用进行适当的管理。在本文中，我们建议制定一项国际行为准则，以实现生物医学研究的全球基因组和临床数据共享。然而，为了使这一拟议的守则得到普遍适用和问责，我们建议将其置于人权框架内。这一主张并非没有先例：国际条约早就承认，每个人都有权享受科学进步及其应用所带来的利益，并有权保护科学成果所产生的精神和物质利益。现在是时候将这些双重权利应用于国际合作的基因组和临床数据共享。
Fostering data sharing is a scientific and ethical imperative. Health gains can be achieved more comprehensively and quickly by combining large, information-rich datasets from across conventionally siloed disciplines and geographic areas. While collaboration for data sharing is increasingly embraced by policymakers and the international biomedical community, we lack a common ethical and legal framework to connect regulators, funders, consortia, and research projects so as to facilitate genomic and clinical data linkage, global science collaboration, and responsible research conduct. Governance tools can be used to responsibly steer the sharing of data for proper stewardship of research discovery, genomics research resources, and their clinical applications. In this article, we propose that an international code of conduct be designed to enable global genomic and clinical data sharing for biomedical research. To give this proposed code universal application and accountability, however, we propose to position it within a human rights framework. This proposition is not without precedent: international treaties have long recognized that everyone has a right to the benefits of scientific progress and its applications, and a right to the protection of the moral and material interests resulting from scientific productions. It is time to apply these twin rights to internationally collaborative genomic and clinical data sharing.