Vayena Effy, Tasioulas John
Health Ethics and Policy Lab, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, 8001 Zurich, Switzerland
Yeoh Tiong Lay Centre for Politics, Philosophy, and Law, The Dickson Poon School of Law, King's College London, London WC2R 2LS, UK.
Philos Trans A Math Phys Eng Sci. 2016 Dec 28;374(2083). doi: 10.1098/rsta.2016.0129.
In this paper, we address the complex relationship between big data and human rights. Because this is a vast terrain, we restrict our focus in two main ways. First, we concentrate on big data applications in scientific research, mostly health-related research. And, second, we concentrate on two human rights: the familiar right to privacy and the less well-known right to science. Our contention is that human rights interact in potentially complex ways with big data, not only constraining it, but also enabling it in various ways; and that such rights are dynamic in character, rather than fixed once and for all, changing in their implications over time in line with changes in the context we inhabit, and also as they interact among themselves in jointly responding to the opportunities and risks thrown up by a changing world. Understanding this dynamic interaction of human rights is crucial for formulating an ethic tailored to the realities-the new capabilities and risks-of the rapidly evolving digital environment.This article is part of the themed issue 'The ethical impact of data science'.
在本文中，我们探讨大数据与人权之间的复杂关系。鉴于这是一个广阔的领域，我们主要从两个方面限定关注范围。其一，我们聚焦于大数据在科学研究中的应用，主要是与健康相关的研究。其二，我们关注两项人权：为人熟知的隐私权以及鲜为人知的科学权。我们的论点是，人权与大数据以潜在复杂的方式相互作用，不仅对大数据有所限制，还以各种方式使其成为可能；而且这些权利具有动态性，并非一成不变，其内涵会随着我们所处环境的变化以及它们自身在共同应对不断变化的世界所带来的机遇和风险时的相互作用而随时间改变。理解人权的这种动态互动对于制定一种契合快速发展的数字环境的现实——新能力和新风险——的伦理准则至关重要。本文是主题为“数据科学的伦理影响”特刊的一部分。
