Abstract
We live in the Information Age. Advances over the past 50 years in computing technology have enabled ever-expanding capacity to generate, store, transfer, process and analyse information about people, societies, products, services, the environment—nearly every aspect of the world. In parallel, concerns over how such data is being used have emerged, focusing especially on issues of privacy and confidentiality. Yet as technological capabilities continue to expand, the debate over ethical uses of data inevitably has evolved as well. Whereas we used to just talk about data, now there is great concern over Big Data. This chapter explores what, exactly, Big Data is; the ethical ramifications of its emergence, particularly for consent and anonymization; and what sorts of policy solutions are being proposed to address these emerging challenges. We will not defend one particular approach, but hope this chapter can be a useful reference for those who are contemplating difficult questions surrounding responsible management of Big Data.
This is a preview of subscription content, log in via an institution.
Buying options
Tax calculation will be finalised at checkout
Purchases are for personal use only
Learn about institutional subscriptionsNotes
- 1.
Michael Cox and David Ellsworth, “Application-Controlled Demand Paging for out-of-Core Visualization,” in Proceedings of the 8th Conference on Visualization (Los Alamitos, California: IEEE Computer Society Press, 1997), 235–44, https://www.nas.nasa.gov/assets/pdf/techreports/1997/nas-97-010.pdf.
- 2.
Doug Laney, “3D Data Management: Controlling Data Volume, Velocity, and Variety,” META Delta 949, no. 2001 (n.d.); Andrea De Mauro, Marco Greco, and Michele Grimaldi, “What Is Big Data? A Consensual Definition and a Review of Key Research Topics,” in AIP Conference Proceedings, vol. 2015 (International Conference on Integrated Information, American Institute of Physics, 2015), 97–104.
- 3.
International Bioethics Committee, “Report of the IBC on Big Data and Health” (UNESCO, 2017); Daniel Fuller, Richard Buote, and Kevin Stanley, “A Glossary for Big Data in Population and Public Health: Discussion and Commentary on Terminology and Research Methods,” Journal of Epidemiology and Community Health, September 16, 2017, jech-2017-209, 608, https://doi.org/10.1136/jech-2017-209608.
- 4.
Nicholas A. Christakis, Meagan Eisenberg, and Harlan M. Krumholz, “Is Big Data Bigger than Its Own Hype?,” Yale School of Management, Yale Insights (blog), July 3, 2017, https://insights.som.yale.edu/insights/is-big-data-bigger-than-its-own-hype.
- 5.
Edgar A. Whitley, “Informational Privacy, Consent and the ‘Control’ of Personal Data,” Information Security Technical Report 14, no. 3 (August 2009): 154–59, https://doi.org/10.1016/j.istr.2009.10.001; Gil Press, “A Very Short History of Big Data,” Forbes.Com, May 9, 2013, https://www.forbes.com/sites/gilpress/2013/05/09/a-very-short-history-of-big-data/#44120dd065a1.
- 6.
Daniel J. Solove, Understanding Privacy, First Harvard University Press paperback edition (Cambridge, Massachusetts London, England: Harvard University Press, 2009); Beate Rössler, The Value of Privacy, English ed. (Cambridge, UK; Malden, MA: Polity, 2005).
- 7.
Adam D. Moore, “Privacy: Its Meaning and Value,” American Philosophical Quarterly 40 (2003): 215–27.
- 8.
Matti Häyry and Tuija Takala, “Genetic Information, Rights and Autonomy,” Theoretical Medicine and Bioethics 22, no. 5 (2001): 403–14.
- 9.
Joseph Kupfer, “Privacy, Autonomy, and Self-Concept,” American Philosophical Quarterly 24, no. 1 (1987): 81–89.
- 10.
Mark A. Rothstein, “Ethical Issues in Big Data Health Research: Currents in Contemporary Bioethics,” The Journal of Law, Medicine & Ethics 43, no. 2 (August 2015): 425–29, https://doi.org/10.1111/jlme.12258.
- 11.
Arvind Narayanan and Vitaly Shmatikov, “Robust De-Anonymization of Large Datasets (How to Break Anonymity of the Netflix Prize Dataset),” ArXiv cs/0610105v2 (2008): 1–24.
- 12.
Anthony Tockar, “Riding with the Stars: Passenger Privacy in the NYC Taxicab Dataset,” Neustar Research (blog), September 15, 2014, https://research.neustar.biz/2014/09/15/riding-with-the-stars-passenger-privacy-in-the-nyc-taxicab-dataset/.
- 13.
John R. Shaffer et al., “Genome-Wide Association Study Reveals Multiple Loci Influencing Normal Human Facial Morphology,” ed. Gregory S. Barsh, PLOS Genetics 12, no. 8 (August 25, 2016): e1006149, https://doi.org/10.1371/journal.pgen.1006149.
- 14.
Timothy Caulfield, “Biobanks and Blanket Consent: The Proper Place of the Public Good and Public Perception Rationales,” King’s Law Journal 18, no. 2 (2007): 209–26; David Wendler, “Broad versus Blanket Consent for Research with Human Biological Samples,” Hastings Center Report 43, no. 5 (September 2013): 3–4, https://doi.org/10.1002/hast.200.
- 15.
M. Sheehan, “Can Broad Consent Be Informed Consent?,” Public Health Ethics 4, no. 3 (November 1, 2011): 226–35, https://doi.org/10.1093/phe/phr020; Markus Christen et al., “On the Compatibility of Big Data Driven Research and Informed Consent: The Example of the Human Brain Project,” in The Ethics of Biomedical Big Data, ed. Brent Daniel Mittelstadt and Luciano Floridi, vol. 29 (Cham: Springer International Publishing, 2016), 199–218, https://doi.org/10.1007/978-3-319-33525-4_9; Gert Helgesson, “In Defense of Broad Consent,” Cambridge Quarterly of Healthcare Ethics 21, no. 01 (January 2012): 40–50, https://doi.org/10.1017/S096318011100048X.
- 16.
Kathy L. Hudson and Francis S. Collins, “Bringing the Common Rule into the 21st Century,” New England Journal of Medicine 373, no. 24 (December 10, 2015): 2293–96, https://doi.org/10.1056/NEJMp1512205.
- 17.
Yannis Bakos, Florencia Marotta-Wurgler, and David R. Trossen, “Does Anyone Read the Fine Print? Consumer Attention to Standard-Form Contracts,” The Journal of Legal Studies 43, no. 1 (January 2014): 1–35, https://doi.org/10.1086/674424.
- 18.
Jesia G Berry et al., “A Randomised Controlled Trial to Compare Opt-in and Opt-out Parental Consent for Childhood Vaccine Safety Surveillance Using Data Linkage,” Journal of Medical Ethics 38, no. 10 (October 2012): 619–25, https://doi.org/10.1136/medethics-2011-100145.
- 19.
Jane Kaye et al., “Dynamic Consent: A Patient Interface for Twenty-First Century Research Networks,” European Journal of Human Genetics 23, no. 2 (February 2015): 141–46, https://doi.org/10.1038/ejhg.2014.71; Dorit T. Stein and Sharon F. Terry, “Reforming Biobank Consent Policy: A Necessary Move Away from Broad Consent Toward Dynamic Consent,” Genetic Testing and Molecular Biomarkers 17, no. 12 (December 2013): 855–56, https://doi.org/10.1089/gtmb.2013.1550.
- 20.
T. Ploug and S. Holm, “Meta Consent: A Flexible and Autonomous Way of Obtaining Informed Consent for Secondary Research,” BMJ 350, no. may07 31 (May 7, 2015): h2146–h2146, https://doi.org/10.1136/bmj.h2146.
- 21.
Harry G. Frankfurt, “Freedom of the Will and the Concept of a Person,” The Journal of Philosophy 68, no. 1 (1971): 5–20.
- 22.
Angela Ballantyne and G Owen Schaefer, “Consent and the Ethical Duty to Participate in Health Data Research,” Journal of Medical Ethics, January 22, 2018, medethics-2017-104, 550, https://doi.org/10.1136/medethics-2017-104550.
- 23.
James Temperton, “NHS Care.Data Scheme Closed after Years of Controversy,” Wired UK, July 6, 2016, http://www.wired.co.uk/article/care-data-nhs-england-closed.
- 24.
Jenni Davidson, “New National Data System Launched for Primary Care in Scotland,” Holyrood, March 7, 2017, https://www.holyrood.com/articles/news/new-national-data-system-launched-primary-care-scotland; David Fone et al., “Change in Alcohol Outlet Density and Alcohol-Related Harm to Population Health (CHALICE): A Comprehensive Record-Linked Database Study in Wales,” Public Health Research 4, no. 3 (March 2016): 1–184, https://doi.org/10.3310/phr04030.
- 25.
Pam Carter, Graeme T Laurie, and Mary Dixon-Woods, “The Social Licence for Research: Why Care.Data Ran into Trouble,” Journal of Medical Ethics 41, no. 5 (May 2015): 404–9, https://doi.org/10.1136/medethics-2014-102374.
- 26.
Mark K Salloway et al., “A De-Identification Tool for Users in Medical Operations and Public Health” (IEEE, 2016), 529–32, https://doi.org/10.1109/BHI.2016.7455951.
- 27.
Dan Zhu, Xiao-Bai Li, and Shuning Wu, “Identity Disclosure Protection: A Data Reconstruction Approach for Privacy-Preserving Data Mining,” Decision Support Systems 48, no. 1 (December 2009): 133–40, https://doi.org/10.1016/j.dss.2009.07.003.
- 28.
Charu C. Aggarwal and Philip S. Yu, “A General Survey of Privacy-Preserving Data Mining Models and Algorithms,” in Privacy-Preserving Data Mining, ed. Charu C. Aggarwal and Philip S. Yu, vol. 34 (Boston, MA: Springer US, 2008), 11–52, https://doi.org/10.1007/978-0-387-70992-5_2.
- 29.
Yves-Alexandre de Montjoye, Samuel S. Wang, and Alex (Sandy) Pentland, “On the Trusted Use of Large-Scale Personal Data,” Bulletin of the Technical Committee on Data Engineering 35, no. 4 (2012): 5–8.
- 30.
Taylor Armerding, “The 17 Biggest Data Breaches of the 21st Century,” CSO Online (blog), January 26, 2018, https://www.csoonline.com/article/2130877/data-breach/the-biggest-data-breaches-of-the-21st-century.html.
- 31.
Lily Hay Newman, “The Worst Hacks of 2017,” Wired, December 31, 2017, https://www.wired.com/story/worst-hacks-2017/.
- 32.
Jon P. Daries et al., “Privacy, Anonymity, and Big Data in the Social Sciences,” Communications of the ACM 57, no. 9 (September 1, 2014): 56–63, https://doi.org/10.1145/2643132.
- 33.
Kathy L. Hudson, M.K. Holohan, and Francis S. Collins, “Keeping Pace with the Times – The Genetic Information Nondiscrimination Act of 2008,” New England Journal of Medicine 358, no. 25 (June 19, 2008): 2661–63, https://doi.org/10.1056/NEJMp0803964; Kevin van Paassen, “How Genetic Testing Can Be Used against You – and How Bill S-201 Could Change That,” The Globe and Mail, April 3, 2016.
- 34.
Usman W. Chohan, “The Panama Papers and Tax Morality,” SSRN Electronic Journal, 2016, https://doi.org/10.2139/ssrn.2759418.
- 35.
Patrick Kierkegaard, “Medical Data Breaches: Notification Delayed Is Notification Denied,” Computer Law & Security Review 28, no. 2 (April 2012): 163–83, https://doi.org/10.1016/j.clsr.2012.01.003.
- 36.
Julia Apostle, “The Uber Data Breach Has Implications for Us All,” Financial Times, November 28, 2017, https://www.ft.com/content/e2bf6caa-d2cb-11e7-a303-9060cb1e5f44.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2018 The Author(s)
About this chapter
Cite this chapter
Schaefer, G.O., Labude, M.K., Nasir, H.U. (2018). Big Data: Ethical Considerations. In: Boonin, D. (eds) The Palgrave Handbook of Philosophy and Public Policy. Palgrave Macmillan, Cham. https://doi.org/10.1007/978-3-319-93907-0_45
Download citation
DOI: https://doi.org/10.1007/978-3-319-93907-0_45
Published:
Publisher Name: Palgrave Macmillan, Cham
Print ISBN: 978-3-319-93906-3
Online ISBN: 978-3-319-93907-0
eBook Packages: Religion and PhilosophyPhilosophy and Religion (R0)