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Beyond the EULA: Improving Consent for Data Mining

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Transparent Data Mining for Big and Small Data

Part of the book series: Studies in Big Data ((SBD,volume 32))

Abstract

Companies and academic researchers may collect, process, and distribute large quantities of personal data without the explicit knowledge or consent of the individuals to whom the data pertains. Existing forms of consent often fail to be appropriately readable and ethical oversight of data mining may not be sufficient. This raises the question of whether existing consent instruments are sufficient, logistically feasible, or even necessary, for data mining. In this chapter, we review the data collection and mining landscape, including commercial and academic activities, and the relevant data protection concerns, to determine the types of consent instruments used. Using three case studies, we use the new paradigm of human-data interaction to examine whether these existing approaches are appropriate. We then introduce an approach to consent that has been empirically demonstrated to improve on the state of the art and deliver meaningful consent. Finally, we propose some best practices for data collectors to ensure their data mining activities do not violate the expectations of the people to whom the data relate.

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Notes

  1. 1.

    For example, Article 7(3) which allows consent to be withdrawn, and Article 17 on the “right to be forgotten” which allows inferences and data to be erased.

  2. 2.

    Facebook Privacy Policy, February 2006: http://web.archive.org/web/20060406105119/http://www.facebook.com/policy.php.

  3. 3.

    Cornell statement: https://perma.cc/JQ2L-TEXQ.

  4. 4.

    Royal Free London Trust Privacy Statement: https://perma.cc/33YE-LYPF.

References

  1. Akkad, A., Jackson, C., Kenyon, S., Dixon-Woods, M., Taub, N., Habiba, M.: Patients’ perceptions of written consent: questionnaire study. Br. Med. J. 333 (7567), 528+ (2006). doi:10.1136/bmj.38922.516204.55

    Google Scholar 

  2. Ayalon, O., Toch, E.: Retrospective privacy: managing longitudinal privacy in online social networks. In: Proceedings of the Ninth Symposium on Usable Privacy and Security. ACM, New York (2013). doi:10.1145/2501604.2501608

    Book  Google Scholar 

  3. Barnes, S.B.: A privacy paradox: social networking in the United States. First Monday 11 (9) (2006). doi:10.5210/fm.v11i9.1394

    Google Scholar 

  4. Bauer, L., Cranor, L.F., Komanduri, S., Mazurek, M.L., Reiter, M.K., Sleeper, M., Ur, B.: The post anachronism: the temporal dimension of Facebook privacy. In: Proceedings of the 12th ACM Workshop on Workshop on Privacy in the Electronic Society, pp. 1–12. ACM, New York (2013). doi:10.1145/2517840.2517859

    Google Scholar 

  5. Berg, J.W., Appelbaum, P.S.: Informed Consent Legal Theory and Clinical Practice. Oxford University Press, Oxford (2001)

    Google Scholar 

  6. Brown, I., Brown, L., Korff, D.: Using NHS patient data for research without consent. Law Innov. Technol. 2 (2), 219–258 (2010). doi:10.5235/175799610794046186

    Article  Google Scholar 

  7. Carmichael, L., Stalla-Bourdillon, S., Staab, S.: Data mining and automated discrimination: a mixed legal/technical perspective. IEEE Intell. Syst. 31 (6), 51–55 (2016). doi:10.1109/mis.2016.96

    Article  Google Scholar 

  8. Donovan-Kicken, E., Mackert, M., Guinn, T.D., Tollison, A.C., Breckinridge, B.: Sources of patient uncertainty when reviewing medical disclosure and consent documentation. Patient Educ. Couns. 90 (2), 254–260 (2013). doi:10.1016/j.pec.2012.10.007

    Article  Google Scholar 

  9. Eslami, M., Rickman, A., Vaccaro, K., Aleyasen, A., Vuong, A., Karahalios, K., Hamilton, K., Sandvig, C.: “I always assumed that I wasn’t really that close to [her]”: reasoning about invisible algorithms in news feeds. In: Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems, CHI ’15, pp. 153–162. ACM, New York (2015). doi:10.1145/2702123.2702556

    Google Scholar 

  10. European Parliament and the Council of the European Union: Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data. Off. J. Eur. Union L 281, 0031–0050 (1995)

    Google Scholar 

  11. Fayyad, U., Piatetsky-Shapiro, G., Smyth, P.: From data mining to knowledge discovery in databases. AI Mag. 17 (3) (1996). doi:10.1609/aimag.v17i3.1230

    Google Scholar 

  12. Friedman, B., Lin, P., Miller, J.K.: Informed consent by design. In: Cranor, L.F., Garfinkel, S. (eds.) Security and Usability, Chap. 24, pp. 495–521. O’Reilly Media, Sebastopol (2005)

    Google Scholar 

  13. Gomer, R., Schraefel, M.C., Gerding, E.: Consenting agents: semi-autonomous interactions for ubiquitous consent. In: Proceedings of the 2014 ACM International Joint Conference on Pervasive and Ubiquitous Computing: Adjunct Publication, UbiComp ’14 Adjunct, pp. 653–658. ACM, New York (2014). doi:10.1145/2638728.2641682

    Google Scholar 

  14. Hamnes, B., van Eijk-Hustings, Y., Primdahl, J.: Readability of patient information and consent documents in rheumatological studies. BMC Med. Ethics 17 (1) (2016). doi:10.1186/s12910-016-0126-0

    Google Scholar 

  15. Hastie, T., Tibshirani, R., Friedman, J.: The Elements of Statistical Learning: Data Mining, Inference, and Prediction, corrected edn. Springer, New York (2003)

    Google Scholar 

  16. Heimbach, I., Gottschlich, J., Hinz, O.: The value of user’s Facebook profile data for product recommendation generation. Electr. Mark. 25 (2), 125–138 (2015). doi:10.1007/s12525-015-0187-9

    Article  Google Scholar 

  17. Hektner, J.M., Schmidt, J.A., Csikszentmihalyi, M.: Experience Sampling Method: Measuring the Quality of Everyday Life. SAGE Publications, Thousand Oaks (2007)

    Book  Google Scholar 

  18. Hill, K.: Facebook Added ‘Research’ To User Agreement 4 Months After Emotion Manipulation Study. http://onforb.es/15DKfGt (2014). Accessed 30 Nov 2016

  19. Hoadley, C.M., Xu, H., Lee, J.J., Rosson, M.B.: Privacy as information access and illusory control: the case of the Facebook News Feed privacy outcry. Electron. Commer. Res. Appl. 9 (1), 50–60 (2010). doi:10.1016/j.elerap.2009.05.001

    Article  Google Scholar 

  20. Hodson, H.: Did Google’s NHS patient data deal need ethical approval?. https://www.newscientist.com/article/2088056-did-googles-nhs-patient-data-deal-need-ethical-approval/ (2016). Accessed 30 Nov 2016

  21. Hodson, H.: Google knows your ills. New Sci. 230 (3072), 22–23 (2016). doi:10.1016/s0262-4079(16)30809-0

    Article  Google Scholar 

  22. Hutton, L., Henderson, T.: “I didn’t sign up for this!”: informed consent in social network research. In: Proceedings of the 9th International AAAI Conference on Web and Social Media, pp. 178–187 (2015). http://www.aaai.org/ocs/index.php/ICWSM/ICWSM15/paper/view/10493

  23. Jackman, M., Kanerva, L.: Evolving the IRB: building robust review for industry research. Wash. Lee Law Rev. Online 72 (3), 442–457 (2016). http://scholarlycommons.law.wlu.edu/wlulr-online/vol72/iss3/8/

    Google Scholar 

  24. Kang, J., Shilton, K., Estrin, D., Burke, J., Hansen, M.: Self-surveillance privacy. Iowa Law Rev. 97 (3), 809–848 (2012). doi:10.2139/ssrn.1729332

    Google Scholar 

  25. Kaye, J., Whitley, E.A., Lund, D., Morrison, M., Teare, H., Melham, K.: Dynamic consent: a patient interface for twenty-first century research networks. Eur. J. Hum. Genet. 23 (2), 141–146 (2014). doi:10.1038/ejhg.2014.71

    Article  Google Scholar 

  26. Kramer, A.D.I., Guillory, J.E., Hancock, J.T.: Experimental evidence of massive-scale emotional contagion through social networks. Proc. Natl. Acad. Sci. 111 (24), 8788–8790 (2014). doi:10.1073/pnas.1320040111

    Article  Google Scholar 

  27. Lewis, K., Kaufman, J., Gonzalez, M., Wimmer, A., Christakis, N.: Tastes, ties, and time: a new social network dataset using Facebook.com. Soc. Netw. 30 (4), 330–342 (2008). doi:10.1016/j.socnet.2008.07.002

  28. Luger, E., Rodden, T.: An informed view on consent for UbiComp. In: Proceedings of the 2013 ACM International Joint Conference on Pervasive and Ubiquitous Computing, pp. 529–538. ACM, New York (2013). doi:10.1145/2493432.2493446

    Google Scholar 

  29. Luger, E., Moran, S., Rodden, T.: Consent for all: revealing the hidden complexity of terms and conditions. In: Proceedings of the SIGCHI Conference on Human Factors in Computing Systems, pp. 2687–2696. ACM, New York (2013). doi:10.1145/2470654.2481371

  30. McDonald, A.M., Cranor, L.F.: The cost of reading privacy policies. I/S: J. Law Policy Inf. Soc. 4 (3), 540–565 (2008). http://www.is-journal.org/files/2012/02/Cranor_Formatted_Final.pdf

  31. Miller, F.G., Wertheimer, A.: Preface to a theory of consent transactions: beyond valid consent. In: Miller, F., Wertheimer, A. (eds.) The Ethics of Consent, Chap. 4, pp. 79–105. Oxford University Press, Oxford (2009). doi:10.1093/acprof:oso/9780195335149.003.0004

    Chapter  Google Scholar 

  32. Moran, S., Luger, E., Rodden, T.: Exploring patterns as a framework for embedding consent mechanisms in human-agent collectives. In: Ślȩzak, D., Schaefer, G., Vuong, S., Kim, Y.S. (eds.) Active Media Technology. Lecture Notes in Computer Science, vol. 8610, pp. 475–486. Springer International Publishing, New York (2014). doi:10.1007/978-3-319-09912-5_40

    Google Scholar 

  33. Morrison, A., McMillan, D., Chalmers, M.: Improving consent in large scale mobile HCI through personalised representations of data. In: Proceedings of the 8th Nordic Conference on Human-Computer Interaction: Fun, Fast, Foundational, NordiCHI ’14, pp. 471–480. ACM, New York (2014). doi:10.1145/2639189.2639239

    Google Scholar 

  34. Mortier, R., Haddadi, H., Henderson, T., McAuley, D., Crowcroft, J., Crabtree, A.: Human-data interaction. In: Soegaard, M., Dam, R.F. (eds.) Encyclopedia of Human-Computer Interaction, Chap. 41. Interaction Design Foundation, Aarhus (2016). https://www.interaction-design.org/literature/book/the-encyclopedia-of-human-computer-interaction-2nd-ed/human-data-interaction

  35. Munteanu, C., Molyneaux, H., Moncur, W., Romero, M., O’Donnell, S., Vines, J.: Situational ethics: Re-thinking approaches to formal ethics requirements for human-computer interaction. In: Proceedings of the 33rd Annual ACM Conference on Human Factors in Computing Systems, pp. 105–114. ACM, New York (2015). doi:10.1145/2702123.2702481

    Google Scholar 

  36. Napoli, P.M.: Social media and the public interest: governance of news platforms in the realm of individual and algorithmic gatekeepers. Telecommun. Policy 39 (9), 751–760 (2015). doi:10.1016/j.telpol.2014.12.003

    Article  Google Scholar 

  37. Narayanan, A., Shmatikov, V.: De-anonymizing social networks. In: Proceedings of the IEEE Symposium on Security and Privacy, pp. 173–187. IEEE, Los Alamitos, CA (2009). doi:10.1109/sp.2009.22

    Google Scholar 

  38. Nissenbaum, H.: Privacy in Context: Technology, Policy, and the Integrity of Social Life. Stanford Law Books, Stanford, CA (2009)

    Google Scholar 

  39. Obar, J.A., Oeldorf-Hirsch, A.: The biggest lie on the internet: ignoring the privacy policies and terms of service policies of social networking services. Social Science Research Network Working Paper Series (2016). doi:10.2139/ssrn.2757465

    Google Scholar 

  40. Patrick, A.: Just-in-time click-through agreements: interface widgets for confirming informed, unambiguous consent. J. Internet Law 9 (3), 17–19 (2005). http://nparc.cisti-icist.nrc-cnrc.gc.ca/npsi/ctrl?action=rtdoc&an=8914195&lang=en

  41. Pitofsky, R., Anthony, S.F., Thompson, M.W., Swindle, O., Leary, T.B.: Privacy online: fair information practices in the electronic marketplace: a report to congress. Security. http://www.ftc.gov/reports/privacy2000/privacy2000.pdf (2000)

  42. Recuber, T.: From obedience to contagion: discourses of power in Milgram, Zimbardo, and the Facebook experiment. Res. Ethics 12 (1), 44–54 (2016). doi:10.1177/1747016115579533

    Article  Google Scholar 

  43. Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation), pp. 1–88. Off. J. Eur. Union L119/1 (2016)

    Google Scholar 

  44. Sankar, P., Mora, S., Merz, J.F., Jones, N.L.: Patient perspectives of medical confidentiality. J. Gen. Inter. Med. 18 (8), 659–669 (2003). doi:10.1046/j.1525-1497.2003.20823.x

    Article  Google Scholar 

  45. Selinger, E., Hartzog, W.: Facebook’s emotional contagion study and the ethical problem of co-opted identity in mediated environments where users lack control. Res. Ethics 12 (1), 35–43 (2016). doi:10.1177/1747016115579531

    Article  Google Scholar 

  46. Sleeper, M., Balebako, R., Das, S., McConahy, A.L., Wiese, J., Cranor, L.F.: The post that wasn’t: exploring self-censorship on Facebook. In: Proceedings of the 2013 Conference on Computer Supported Cooperative Work, CSCW 2013, pp. 793–802. ACM, New York (2013). doi:10.1145/2441776.2441865

    Google Scholar 

  47. Solove, D.J.: Privacy self-management and the consent dilemma. Harv. Law Rev. 126 (7), 1880–1903 (2013). http://heinonline.org/HOL/Page?handle=hein.journals/hlr126&id=&page=&collection=journals&id=1910

  48. Staiano, J., Oliver, N., Lepri, B., de Oliveira, R., Caraviello, M., Sebe, N.: Money walks: a human-centric study on the economics of personal mobile data. In: Proceedings of Ubicomp 2014 (2014). doi:10.1145/2632048.2632074

    Book  Google Scholar 

  49. Steinke, G.: Data privacy approaches from US and EU perspectives. Telematics Inform. 19 (2), 193–200 (2002). doi:10.1016/s0736-5853(01)00013-2

    Article  Google Scholar 

  50. Steinsbekk, K.S., Kare Myskja, B., Solberg, B.: Broad consent versus dynamic consent in biobank research: is passive participation an ethical problem? Eur. J. Hum. Genet. 21 (9), 897–902 (2013). doi:10.1038/ejhg.2012.282

    Article  Google Scholar 

  51. Tankard, C.: What the GDPR means for businesses. Netw. Secur. 2016 (6), 5–8 (2016). doi:10.1016/s1353-4858(16)30056-3

    Article  Google Scholar 

  52. Vitak, J., Shilton, K., Ashktorab, Z.: Beyond the Belmont Principles: ethical challenges, practices, and beliefs in the online data research community. In: Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work and Social Computing, pp. 941–953. ACM, New York (2016). doi:10.1145/2818048.2820078

    Google Scholar 

  53. Vučemilo, L., Borovečki, A.: Readability and content assessment of informed consent forms for medical procedures in Croatia. PLoS One 10 (9), e0138,017+ (2015). doi:10.1371/journal.pone.0138017

    Google Scholar 

  54. Williams, H., Spencer, K., Sanders, C., Lund, D., Whitley, E.A., Kaye, J., Dixon, W.G.: Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research. JMIR Med. Inform. 3 (1), e3+ (2015). doi:10.2196/medinform.3525

    Google Scholar 

  55. World Economic Forum: Personal data: the emergence of a new asset class. http://www.weforum.org/reports/personal-data-emergence-new-asset-class (2011)

  56. Zimmer, M.: “But the data is already public”: on the ethics of research in Facebook. Ethics Inf. Technol. 12 (4), 313–325 (2010). doi:10.1007/s10676-010-9227-5

    Article  Google Scholar 

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Acknowledgements

This work was supported by the Engineering and Physical Sciences Research Council [grant number EP/L021285/1].

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Hutton, L., Henderson, T. (2017). Beyond the EULA: Improving Consent for Data Mining. In: Cerquitelli, T., Quercia, D., Pasquale, F. (eds) Transparent Data Mining for Big and Small Data. Studies in Big Data, vol 32. Springer, Cham. https://doi.org/10.1007/978-3-319-54024-5_7

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