Author(s):

  • Deborah Lupton

Abstract:

Self-tracking technologies and practices offer ways of generating vast reams of personal details, raising questions about how these data are revealed or exposed to others. In this article, I report on findings from an interview-based study of long-term Australian self-trackers who were collecting and reviewing personal information about their bodies and other aspects of their everyday lives. The discussion focuses on the participants’ understandings and practices related to sharing their personal data and to data privacy. The contextual elements of self-tracked sharing and privacy concerns were evident in the participants’ accounts and were strongly related to ideas about why and how these details should be accessed by others. Sharing personal information from self-tracking was largely viewed as an intimate social experience. The value of self-tracked data to contribute to close face-to-face relationships was recognized and related aspects of social privacy were identified. However, most participants did not consider the possibilities that their personal information could be distributed well-beyond these relationships by third parties for commercial purposes (or what has been termed “institutional privacy”). These findings contribute to a more-than-digital approach to personal data sharing and privacy practices that recognizes the interplay between digital and non-digital practices and contexts. They also highlight the relational and social dimensions of self-tracking and concepts of data privacy.

Documentation:

https://doi.org/10.3389/fdgth.2021.649275

References:

1. Lupton D. The Quantified Self: A Sociology of Self-Tracking. Cambridge: Polity Press (2016).

Google Scholar

2. Lynch R, and Farrington C. Quantified Lives and Vital Data: Exploring Health and Technology Through Personal Medical Devices. Cham: Springer. (2018). doi: 10.1057/978-1-349-95235-9

CrossRef Full Text | Google Scholar

3. John N. The Age of Sharing. Cambridge: Polity (2017).

Google Scholar

4. Agger B. Oversharing: Presentations of Self in the Internet Age. London: Routledge (2015). doi: 10.4324/9781315732282

CrossRef Full Text | Google Scholar

5. Lyon D. The Culture of Surveillance: Watching as a Way of Life. (2018). New York: John Wiley & Sons.

Google Scholar

6. Lampinen A. Deceptively simple: unpacking the notion of “sharing.” Social Media. (2015) 1:8135. doi: 10.1177/2056305115578135

CrossRef Full Text | Google Scholar

7. Spiller K, Ball K, Bandara A, Maureen M, Ciaran M, Bashar N, et al. Data privacy: users’ thoughts on quantified self personal data. In: Ajana B, editor. Self-Tracking: Empirical and Philosophical Reflections. Cham: Springer (2018). p. 111–24. doi: 10.1007/978-3-319-65379-2_8

CrossRef Full Text | Google Scholar

8. Smith GJ, and Vonthethoff B. Health by numbers? Exploring the practice and experience of datafied health. Health Sociol Rev. (2017) 26:6–21. doi: 10.1080/14461242.2016.1196600

CrossRef Full Text | Google Scholar

9. Stragier J, Evens T, and Mechant P. Broadcast yourself: an exploratory study of sharing physical activity on social networking sites. Media Int Austr. (2015) 155:120–9. doi: 10.1177/1329878X1515500114

CrossRef Full Text | Google Scholar

10. Charitsis V, Yngfalk AF, and Skålén P. “Made to run”: biopolitical marketing and the making of the self-quantified runner. Marketing Theory. (2018) 19:347–66. doi: 10.1177/1470593118799794

CrossRef Full Text | Google Scholar

11. Lupton D. Lively data, social fitness and biovalue: the intersections of health self-tracking and social media. In: Burgess J, Marwick A, Poell T, editors. The Sage Handbook of Social Media. London: Sage (2018). p. 562–78. doi: 10.4135/9781473984066.n32

CrossRef Full Text | Google Scholar

12. Spotswood F, Shankar A, and Piwek L. Changing emotional engagement with running through communal self-tracking: the implications of ‘teleoaffective shaping’for public health. Sociol Health Illness. (2020) 42:772–88. doi: 10.1111/1467-9566.13057

PubMed Abstract | CrossRef Full Text | Google Scholar

13. Esmonde K, and Jette S. Assembling the ‘Fitbit subject’: a Foucauldian-sociomaterialist examination of social class, gender and self-surveillance on Fitbit community message boards. Health. (2020) 24:299–314. doi: 10.1177/1363459318800166

PubMed Abstract | CrossRef Full Text | Google Scholar

14. Mazanderani F, O’Neill B, and Powell J. “People power” or “pester power”? YouTube as a forum for the generation of evidence and patient advocacy. Patient Educ Counseling. (2013) 93:420–5. doi: 10.1016/j.pec.2013.06.006

PubMed Abstract | CrossRef Full Text | Google Scholar

15. Ging D, and Garvey S. ‘Written in these scars are the stories, I. can’t explain’: a content analysis of pro-ana and thinspiration image sharing on Instagram. New Media Soc. (2018) 20:1181–200. doi: 10.1177/1461444816687288

CrossRef Full Text | Google Scholar

16. Del Casino VJ, and Brooks CF. Talking about bodies online: Viagra, YouTube, and the politics of public(ized) sexualities. Gender Place Culture. (2015) 22:474–93. doi: 10.1080/0966369X.2013.879106

CrossRef Full Text | Google Scholar

17. TikTok. Health and wellness on TikTok. (2020). Available online at: https://newsroom.tiktok.com/en-us/health-and-wellness-on-tiktok(accessed January 4, 2021).

Google Scholar

18. Erikainen S, Pickersgill M, Cunningham-Burley S, Chan S, et al. Patienthood and participation in the digital era. Digital Health. (2019) 5:546. doi: 10.1177/2055207619845546

PubMed Abstract | CrossRef Full Text | Google Scholar

19. Wang J, and Wei L. Fear and hope, bitter and sweet: emotion sharing of cancer community on Twitter. Social Media. (2020) 6:7319. doi: 10.1177/2056305119897319

CrossRef Full Text | Google Scholar

20. Robards B, Lyall B, and Moran C. Confessional data selfies and intimate digital traces. New Media Soc. (2020). doi: 10.1177/1461444820934032. [Epub ahead of print].

CrossRef Full Text | Google Scholar

21. Lupton D. The commodification of patient opinion: the digital patient experience economy in the age of big data. Sociol Health Illness.(2014) 36:856–69. doi: 10.1111/1467-9566.12109

PubMed Abstract | CrossRef Full Text | Google Scholar

22. Maslen S, and Lupton D. ‘Keeping it real’: women’s enactments of lay health knowledges and expertise on Facebook. Sociol Health Illness.(2019) 41:1637–51. doi: 10.1111/1467-9566.12982

PubMed Abstract | CrossRef Full Text | Google Scholar

23. Niva M. Online weight-loss services and a calculative practice of slimming. Health. (2017) 21:409–24. doi: 10.1177/1363459315622042

PubMed Abstract | CrossRef Full Text | Google Scholar

24. Rosenblat A, Wikelius K, boyd d, Gangadharan SP, and Yu C. (2014). Data & Civil Rights: Health Primer. Data & Society Research Institute. Available online at: http://www.datacivilrights.org/pubs/2014-1030/Health.pdf (accessed January 4, 2021).

Google Scholar

25. Brandtzaeg PB, Pultier A, and Moen GM. Losing control to data-hungry apps: a mixed-methods approach to mobile app privacy. Social Sci Comp Rev. (2019) 37:466–88. doi: 10.1177/0894439318777706

CrossRef Full Text | Google Scholar

26. Van Dijck J, and Poell T. Understanding the promises and premises of online health platforms. Big Data Soc. (2016) 3. doi: 10.1177/2053951716654173. [Epub ahead of print].

CrossRef Full Text | Google Scholar

27. Wolff A, Gooch D, Montaner JJC, Rashid U, and Kortuem G. Creating an understanding of data literacy for a data-driven society. J Commun Inform. (2016) 12:3275. doi: 10.15353/joci.v12i3.3275

CrossRef Full Text | Google Scholar

28. Crawford K, and Schultz J. Big data and due process: toward a framework to redress predictive privacy harms. Boston College Law Rev.(2014) 55:93–128.

Google Scholar

29. Eubanks V. Automating Inequality: How High-Tech Tools Profile, Police, and Punish the Poor. New York, NY: St. Martin’s Press. (2018).

Google Scholar

30. Noble SU. Algorithms of Oppression: How Search Engines Reinforce Racism. New York, NY: NYU Press (2018). doi: 10.2307/j.ctt1pwt9w5

CrossRef Full Text | Google Scholar

31. Newman C, MacGibbon J, Smith AK, Broady T, Lupton D, Davis M, et al. Understanding Trust in Digital Health among Communities Affected by BBVs and STIs in Australia. Sydney: UNSW Sydney (2020).

Google Scholar

32. Flybuys.com. Collect points with Fitbit. (2020). Available online at: https://www.flybuys.com.au/collect/#/partners/fitbit (accessed January 4, 2021).

Google Scholar

33. Karp P. Australians’ Medicare Details Illegally Sold on the Darknet – Two Years After Breach Exposed. The Guardian. (2019). Available online at: https://www.theguardian.com/australia-news/2019/may/16/australians-medicare-details-illegally-sold-on-darknet-two-years-after-breach-exposed (accessed January 4, 2021).

Google Scholar

34. Carney T. Automation in social security: implications for merits review? Austr J Social Issues. (2020) 55:260–74. doi: 10.1002/ajs4.95

CrossRef Full Text | Google Scholar

35. Lyall B, and Robards B. Tool, toy and tutor: subjective experiences of digital self-tracking. J Sociol. (2017) 54:108–24. doi: 10.1177/1440783317722854

CrossRef Full Text | Google Scholar

36. Fors V, and Pink S. Pedagogy as possibility: health interventions as digital openness. Social Sci. (2017) 6:20059. doi: 10.3390/socsci6020059

CrossRef Full Text | Google Scholar

37. LuptonD. “I just want it to be done, done, done!” Food tracking apps, affects, and agential capacities. Multimodal Technol Interaction. (2018) 2:20029. doi: 10.3390/mti2020029 

CrossRef Full Text | Google Scholar

38. Lupton D. Australian women’s use of health and fitness apps and wearable devices: a feminist new materialism analysis. Feminist Media Stud. (2020) 20:983–98. doi: 10.1080/14680777.2019.1637916

CrossRef Full Text | Google Scholar

39. Lupton D, and Maslen S. The more-than-human sensorium: sensory engagements with digital self-tracking technologies. Senses Soc.(2018) 13:190–202. doi: 10.1080/17458927.2018.1480177

CrossRef Full Text | Google Scholar

40. Lupton D, Pink S, LaBond CH, and Sumartojo S. Personal data contexts, data sense and self-tracking cycling. Int J Commun. (2018) 12:2268.

Google Scholar

41. Pink S, and Fors V. Being in a mediated world: self-tracking and the mind–body–environment. Cultural Geogr. (2017) 24:375–88. doi: 10.1177/1474474016684127

CrossRef Full Text | Google Scholar

42. Pink S, and Fors V. Self-tracking and mobile media: new digital materialities. Mobile Media Commun. (2017) 5:219–38. doi: 10.1177/2050157917695578

CrossRef Full Text | Google Scholar

43. Gerhard U, and Hepp A. Appropriating digital traces of self-quantification: contextualizing pragmatic and enthusiast self-trackers. Int J Commun. (2018) 12:683–700.

Google Scholar

44. Goodyear V, Kerner C, and Quennerstedt M. Young people’s uses of wearable healthy lifestyle technologies; surveillance, self-surveillance and resistance. Sport Educ Soc. (2019) 24:212–25. doi: 10.1080/13573322.2017.1375907

CrossRef Full Text | Google Scholar

45. Bannerman S. Relational privacy and the networked governance of the self. Inform Commun Soc. (2019) 22:2187–202. doi: 10.1080/1369118X.2018.1478982

CrossRef Full Text | Google Scholar

46. Marwick A, and boyd d. Networked privacy: how teenagers negotiate context in social media. New Media Soc.(2014) 17:1051–67. doi: 10.1177/1461444814543995

CrossRef Full Text | Google Scholar

47. Nissenbaum H. A contextual approach to privacy online. Daedalus Fall. (2011) 32–48. doi: 10.1162/DAED_a_00113

CrossRef Full Text | Google Scholar

48. Raynes-Goldie K. Aliases, creeping, and wall cleaning: understanding privacy in the age of Facebook. First Monday. (2010) 15:2775. doi: 10.5210/fm.v15i1.2775

CrossRef Full Text | Google Scholar

49. Lutz C, and Ranzini G. Where dating meets data: investigating social and institutional privacy concerns on Tinder. Social Media Soc.(2017) 3:319829. doi: 10.2139/ssrn.3319829

CrossRef Full Text | Google Scholar

50. Hargittai E, and Marwick A. “What can, I. really do?” Explaining the privacy paradox with online apathy. Int J Commun. (2016) 10:1738.

Google Scholar

51. Quan-Haase A, and Elueze I. Revisiting the privacy paradox: concerns and protection strategies in the social media experiences of older adults. In: Proceedings of the 9th International Conference on Social Media and Society. Copenhagen: ACM (2018). p. 150–9. doi: 10.1145/3217804.3217907

CrossRef Full Text | Google Scholar

52. Pangrazio L, and Selwyn N. “It’s not like it’s life or death or whatever”: young people’s understandings of social media data. Social Media Soc. (2018) 4. doi: 10.1177/2056305118787808

CrossRef Full Text | Google Scholar

53. Hollenbaugh EE. Privacy management among social media natives: an exploratory study of Facebook and Snapchat. Social Media Soc.(2019) 5. doi: 10.1177/2056305119855144

CrossRef Full Text | Google Scholar

54. Spiller K. “Putting everything up there”: framing how we navigate the intricacies of privacy and security on social media. Human Soc.(2020) 45:3–23. doi: 10.1177/0160597620904502

CrossRef Full Text | Google Scholar

55. Lomborg S, Thylstrup NB, and Schwartz J. The temporal flows of self-tracking: checking in, moving on, staying hooked. New Media Soc.(2018) 20:4590–607. doi: 10.1177/1461444818778542

CrossRef Full Text | Google Scholar

56. Zimmer M, Kumar P, Vitak J, et al. ‘There’s nothing really they can do with this information’: unpacking how users manage privacy boundaries for personal fitness information. Inform Commun Soc. (2020) 23:1020–37. doi: 10.1080/1369118X.2018.1543442

CrossRef Full Text | Google Scholar

57. Gabriele S, and Chiasson S. Understanding fitness tracker users’ security and privacy knowledge, attitudes and behaviours. In: Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems. Honolulu: ACM (2020). p. 1–12. doi: 10.1145/3313831.3376651

CrossRef Full Text | Google Scholar

58. McKinney P, Cox AM, and Sbaffi L. Information literacy in food and activity tracking among parkrunners, people with Type 2 diabetes, and people with Irritable Bowel Syndrome: exploratory study. J Med Internet Res. (2019) 21:13652. doi: 10.2196/13652

PubMed Abstract | CrossRef Full Text | Google Scholar

59. Lupton D. ‘It’s made me a lot more aware’: a new materialist analysis of health self-tracking. Media Int Austr. (2019) 171:66–79. doi: 10.1177/1329878X19844042

CrossRef Full Text | Google Scholar

60. Lupton D, and Smith GJD. “A much better person”: the agential capacities of self-tracking practices. In: Ajana B, editor. Metric Culture: Ontologies of Self-Tracking Practices. London: Emerald Publishing (2018). p. 57–73. doi: 10.1108/978-1-78743-289-520181004

CrossRef Full Text | Google Scholar

61. Marent B, Henwood F, and Darking M. Ambivalence in digital health: co-designing an mHealth platform for HIV care. Social Sci Med.(2018) 215:133–41. doi: 10.1016/j.socscimed.2018.09.003

PubMed Abstract | CrossRef Full Text | Google Scholar

62. Lomborg S, and Frandsen K. Self-tracking as communication. Inform Commun Soc. (2016) 19:1015–27. doi: 10.1080/1369118X.2015.1067710

CrossRef Full Text | Google Scholar

63. Marwick A, and Hargittai E. Nothing to hide, nothing to lose? Incentives and disincentives to sharing information with institutions online. Inform Commun Soc. (2019) 22:1697–713. doi: 10.1080/1369118X.2018.1450432

CrossRef Full Text | Google Scholar

64. Fowkes L. Seeing people in the computer: the role of information technology in remote employment services. Austr J Social Issues. (2020) 55:13–26. doi: 10.1002/ajs4.81

CrossRef Full Text | Google Scholar

65. Lovett R, Lee V, Kukutai T, Cormack D, Rainie SC, and Walker J. Good data practices for Indigenous data sovereignty and governance. In: Daly A, Devitt SK, Mann M, editors. Good Data. Amsterdam: Institute of Network Cultures, (2019). p. 26–36.

Google Scholar

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