The dynamics of big data and human rights: the case of scientific research.
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'.
Health Ethics and Policy Lab, Epidemiology, Biostatistics and Prevention Institute, University of Zurich, 8001 Zurich, Switzerland effy.vayena@uzh.ch.
Effy
http://orcid.org/0000-0003-1303-5467
E
Vayena
Yeoh Tiong Lay Centre for Politics, Philosophy, and Law, The Dickson Poon School of Law, King's College London, London WC2R 2LS, UK.
John
J
Tasioulas
D006806:Human Rights; D006801:Humans; D007254:Information Science / Q000941:ethics / Q000331:legislation & jurisprudence; D038622:Internationality; D012106:Research
big data; data ethics; human right to privacy; human right to science