Abstract
The promises of Big Data Analytics in the area of health are grand and tempting. Access to the large pools of data, much of which is personal, is said to be vital if the Big Data health initiatives are to succeed. The resulting rhetoric is of data sharing . This contribution exposes ‘the other side’ of data sharing which often remains in the dark when the Information Industry and researchers advocate for more relaxed rules of data access: namely, the paper frames the issue of personal data use in terms of the commons , a resource shared by a group of appropriators and therefore subject to social dilemmas. The paper argues that the uncontrolled use of the data commons will ultimately result in a number of the commons problems, and elaborates on the two problems in particular: disempowerment of the individual vis-à-vis the Information Industry, and the enclosure of data by a few Information Industry actors. These key message is: if one chooses to approach data as commons and advocates data use for common good , one should also account for the commons problems that come with such sharing.
Sharing is Caring.
Dave Eggers, “The Circle”
We can cure any disease, end hunger, everything, because we won’t be dragged down by … our petty secrets, our hoarding of information and knowledge. We will finally reach our full potential.
Dave Eggers, “The Circle”
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Notes
- 1.
See, e.g. Morozov (2015).
- 2.
- 3.
http://www.datasaveslives.eu/. The mission statement of the group is the following: “The European Data in Health Research Alliance brings together academic, patient and research organisations from across Europe. Together, we are committed to ensuring that the Data Protection Regulation allows the seminal research that has taken place for many years to continue by ensuring research is not subject to an obligation to ask specific consent when personal data is used.” (available on http://www.datasaveslives.eu/who-we-are accessed 23 May 2016).
- 4.
- 5.
Recital 157 General Data Protection Regulation.
- 6.
Pentland et al. (2013).
- 7.
- 8.
Hodson (2016), accessed 23 May 2016.
- 9.
Bollier (2007, p. 31).
- 10.
Hess and Ostrom (2007, p. 3).
- 11.
Hardin (1968).
- 12.
Ibid., p.1244.
- 13.
McGinnis and Walker (2010, 293–301, p. 296).
- 14.
Hess and Ostrom (n 10), p. 11.
- 15.
Ostrom (2010, p. 642 et seq).
- 16.
Ibid., p. 644 et seq.
- 17.
Ibid., p. 645.
- 18.
McGinnis and Walker (n 13), p. 296.
- 19.
Ibid., pp. 641–672.
- 20.
Hess and Ostrom (2003).
- 21.
Gardner et al. (1990, pp. 335–358); Ostrom (n 15), 641–672.
- 22.
Ostrom (n 15), p. 645.
- 23.
Gardner et al. (n 22), p. 355.
- 24.
Ibid., p. 336; Hess and Ostrom (n 21), p. 128.
- 25.
Hess and Ostrom (n 21), p. 128.
- 26.
Hess and Ostrom (n 21), p. 129.
- 27.
Ibid., p. 129–130.
- 28.
Ostrom (n 15), p. 647.
- 29.
Ostrom (n 15), p. 647.
- 30.
Hess (2008).
- 31.
Bollier (n 9), p. 29.
- 32.
Ibid., p.32 (Commons “as a philosophical framework to contextualize and support their advocacy against giving away something that should belong to everyone, the common heritage of humankind, into private interest”).
- 33.
Ibid.
- 34.
Regan (2002, pp. 382–405).
- 35.
- 36.
Bollier (n 9), p. 33.
- 37.
Frischmann et al. (2014).
- 38.
Yeung (2011).
- 39.
E.g. Hess and Ostrom (2007, p. 46).
- 40.
Hess and Ostrom (n 10), p. 10.
- 41.
Hess and Ostrom (n 40), p. 46.
- 42.
Hess and Ostrom (n 10), p. 10.
- 43.
E.g. Ostrom et al. (1994, p. 12), on technological externalities.
- 44.
Gardner et al. (n 22).
- 45.
Ibid., p. 346.
- 46.
Gardner et al. (n 22), p. 346.
- 47.
Ibid., p. 340.
- 48.
Ibid., p. 344.
- 49.
Ostrom et al. (1994, p. 9).
- 50.
For one of the few academic contributions mentioning this, see Moerel and Prins (2016).
- 51.
Article 29 Working Party, ‘Letter to the Director of Sustainable and Secure Society Directorate of the European Commission,’ published 5 February 2015 available online at http://ec.europa.eu/justice/data-protection/article-29/documentation/other-document/files/2015/20150205_letter_art29wp_ec_health_data_after_plenary_en.pdf and Annex I http://ec.europa.eu/justice/data-protection/article-29/documentation/other-document/files/2015/20150205_letter_art29wp_ec_health_data_after_plenary_annex_en.pdf (hereinafter ‘the Annex’).
- 52.
The Annex, p. 2.
- 53.
Ibid.
- 54.
Ibid., p. 3.
- 55.
Ibid., p. 4.
- 56.
Ibid., p. 4.
- 57.
Ibid.
- 58.
Ibid.
- 59.
Ibid.
- 60.
Ibid., p. 5.
- 61.
Mayer et al. (2016, p. 5539).
- 62.
E.g. Pentland (2014, p. 145) et seq.; Pentland, Reid, and Heibeck, (n 6).
- 63.
E.g. Hildebrandt (2013, p. 15).
- 64.
Article 29 Working Party ‘Opinion 4/2007 on the concept of personal data,’ 20 June 2007, p. 3 (WP 136); the implementation of the definition of personal data according to the UK Data Protection Act is one of the most restrictive (Millard and Hon 2011), available at SSRN: http://ssrn.com/abstract=1809182, p. 8.
- 65.
Reding (2012), p. 121 and CJEU Case C-468/10 ASNEF, at para. 35.
- 66.
WP 136.
- 67.
WP 136, p. 15.
- 68.
Mark Taylor, Genetic data and the law, Cambridge University Press, p. 140.
- 69.
Ohm (2010, p. 1742) et seq. and 1759.
- 70.
Sweeney (2000).
- 71.
Ibid.
- 72.
Narayanan and Shmatikov (2009), available online at http://ieeexplore.ieee.org.
- 73.
Bohannon (2015, p. 468).
- 74.
Koops (2014).
- 75.
The meaning of the ‘data ecosystem’ may be related to, but different from how the notion is used elsewhere in the literature. E.g. see Cavoukian (2012), where the Personal Data Ecosystem (PDE) is defined as “a collection of tools and initiatives aimed at facilitating individual control over personal information” (p. 3) and “the emerging landscape of companies and organizations that believe individuals should control their personal data, and who make available a growing number of tools and technologies to enable this. Aside from legal requirements, the starting premise of the PDE is that individuals control the sharing of their own “official record,” (also called a “golden record”) and set the rules as to who can access and use their personal information for what purposes.” (p. 5).
- 76.
Purtova (2015).
- 77.
Ibid., p. 102 et seq. I use ‘economics of personal data scholarship’ broadly here, to include not only contributions of the ‘formal’ information and personal data economists such as Stiglitz (2000, p. 1448), and Acquisti, ‘The Economics of Personal Data and the Economics of Privacy’, Background paper #3, prepared for Joint WPISP-WPIE Roundtable ‘The Economics of Personal Data and Privacy: 30 Years after the OECD Privacy Guidelines’), www.oecd.org/sti/ieconomy/46968784.pdf, but also claims made by the privacy and data protection scholars concerning the nature of personal data as a resource, such as Samuelson (2000, 1138), Radin (1995–1996).
- 78.
Purtova (n 77), p. 103 et seq.
- 79.
Floridi et al. (2015).
- 80.
- 81.
In the “Internet of People” people are “integrated” into the Internet of Things, e.g. with their smartphones acting as the connectors (see for instance Miranda et al. 2015).
- 82.
In ‘smart cities’, information technologies such as inbuilt sensors, monitoring of social media, intelligent infrastructures, etc. are used to quantify and analyse everything in or around that living space and its inhabitants, including weather, “to optimize public services for citizens, better use of resources and less impact on the environment.” (European Commission ‘Smart Cities’, last updated 18 June 2015, available online at http://ec.europa.eu/digital-agenda/en/smart-cities).
- 83.
I use the word “processed” here in the meaning close to how it is used in relation to production, e.g. production of new knowledge through Big Data Analytics like production of tinned tuna from tuna fish.
- 84.
“Ecosystem” (Ecology) Oxford Dictionaries, available online at http://www.oxforddictionaries.com/definition/english/ecosystem.
- 85.
Section 10.3.2 develops this point further.
- 86.
Schwartz (2004, p. 2085).
- 87.
- 88.
- 89.
Article 29 Working Party, ‘Opinion 8/2001 on the Processing of Personal Data in the Employment Context’; Brandimarte et al. (2012, pp. 340–347). doi:10.1177/1948550612455931, http://spp.sagepub.com/cgi/doi/10.1177/1948550612455931; US Federal Trade Commission (2012).
- 90.
Floridi (2014), Taylor et al., forthcoming.
- 91.
Ostrom (n 15).
- 92.
L. Taylor, L. Floridi and B. van der Sloot, ‘Conclusion: what do we know about group privacy?’, in Taylor, Floridi and van der Sloot eds. (n 91).
- 93.
Gillespie (2014).
- 94.
Schwartz and Treanor (2001, p. 1393), Lessig (2006), available online at http://codev2.cc/, pp. 200–230.
- 95.
As described in Foucault (1988, pp. 109–133).
- 96.
Dahl (1957, p. 202).
- 97.
Koops (2010, p. 977).
- 98.
Castells (2010, pp. xxvii–xxx).
- 99.
- 100.
Argenton and Prüfer (2012).
- 101.
Zylinska (August 13, 2002, p. 239).
- 102.
Dickerson et al. (2011, p. 5).
- 103.
Pylyshyn (2003).
- 104.
Mayer-Schonberger and Cukier (2013, p. 256).
- 105.
Custers et al. (2013).
- 106.
Brandimarte, Acquisti, and Loewenstein (n 90), pp. 340–347.
- 107.
Hildebrandt (2012, p. 48).
- 108.
Coeckelbergh (2013, p. 135).
- 109.
Hildebrandt (n 108), pp. 41–56; Hoofnagle et al. (2011).
- 110.
Foucault (n 96).
- 111.
Hildebrandt (n 108).
- 112.
Bollier (n 9), p. 31.
- 113.
Ibid.
- 114.
E.g. Radin (1995–1996, 513) et seq.
- 115.
Hess and Ostrom (n 10), p. 13.
- 116.
Ibid.
- 117.
Boyle (2003).
- 118.
Hess and Ostrom (n 10), pp. 12–13.
- 119.
Morozov (n 1).
- 120.
Purtova (n 77).
- 121.
E.g. Varian (2015); Hal Varian, ‘Markets for Information Goods’ http://people.ischool.berkeley.edu/~hal/Papers/japan/; Stiglitz (2000, 1448).
- 122.
Argenton and Prüfer (n 101).
- 123.
See Introduction to this contribution.
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Purtova, N. (2017). Health Data for Common Good: Defining the Boundaries and Social Dilemmas of Data Commons. In: Adams, S., Purtova, N., Leenes, R. (eds) Under Observation: The Interplay Between eHealth and Surveillance. Law, Governance and Technology Series(), vol 35. Springer, Cham. https://doi.org/10.1007/978-3-319-48342-9_10
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