Literature DB >> 28336802

The dynamics of big data and human rights: the case of scientific research.

Effy Vayena1, John Tasioulas2.   

Abstract

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'.
© 2016 The Author(s).

Entities:  

Keywords:  big data; data ethics; human right to privacy; human right to science

Mesh:

Year:  2016        PMID: 28336802      PMCID: PMC5124070          DOI: 10.1098/rsta.2016.0129

Source DB:  PubMed          Journal:  Philos Trans A Math Phys Eng Sci        ISSN: 1364-503X            Impact factor:   4.226


  7 in total

1.  National data bank: its advocates try to erase "big brother" image.

Authors:  L J Carter
Journal:  Science       Date:  1969-01-10       Impact factor: 47.728

2.  The end of privacy. Introduction.

Authors:  Martin Enserink; Gilbert Chin
Journal:  Science       Date:  2015-01-30       Impact factor: 47.728

3.  Identity and privacy. Unique in the shopping mall: on the reidentifiability of credit card metadata.

Authors:  Yves-Alexandre de Montjoye; Laura Radaelli; Vivek Kumar Singh; Alex Sandy Pentland
Journal:  Science       Date:  2015-01-30       Impact factor: 47.728

4.  Identifying personal genomes by surname inference.

Authors:  Melissa Gymrek; Amy L McGuire; David Golan; Eran Halperin; Yaniv Erlich
Journal:  Science       Date:  2013-01-18       Impact factor: 47.728

5.  Caught in the web: informed consent for online health research.

Authors:  Effy Vayena; Anna Mastroianni; Jeffrey Kahn
Journal:  Sci Transl Med       Date:  2013-02-20       Impact factor: 17.956

6.  Finding the missing link for big biomedical data.

Authors:  Griffin M Weber; Kenneth D Mandl; Isaac S Kohane
Journal:  JAMA       Date:  2014-06-25       Impact factor: 56.272

Review 7.  Between Openness and Privacy in Genomics.

Authors:  Effy Vayena; Urs Gasser
Journal:  PLoS Med       Date:  2016-01-12       Impact factor: 11.069

  7 in total
  3 in total

1.  Scientific Data Management in the Age of Big Data: An Approach Supporting a Resilience Index Development Effort.

Authors:  Linda C Harwell; Deborah N Vivian; Michelle D McLaughlin; Stephen F Hafner
Journal:  Front Environ Sci       Date:  2019-06-04

2.  The future regulation of artificial intelligence systems in healthcare services and medical research in the European Union.

Authors:  Janos Meszaros; Jusaku Minari; Isabelle Huys
Journal:  Front Genet       Date:  2022-10-04       Impact factor: 4.772

Review 3.  Considerations for ethics review of big data health research: A scoping review.

Authors:  Marcello Ienca; Agata Ferretti; Samia Hurst; Milo Puhan; Christian Lovis; Effy Vayena
Journal:  PLoS One       Date:  2018-10-11       Impact factor: 3.240

  3 in total

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