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Privacy as a Practice: Exploring the Relational and Spatial Dynamics of HIV-Related Information Seeking

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Computers, Privacy and Data Protection: an Element of Choice

Abstract

This paper is an exploration of the relational and spatial dynamics of privacy in the context of HIV-related information seeking. It is a study of how a specific group of people, women living with HIV in London, go about “doing privacy” when seeking information in relation to their health. It is commonplace to stress the salience of adopting a contextual approach to privacy. We explore this further, asking what treating privacy as a highly situated practice rather than as a discrete “value” or “right” can tell us about what constitutes the “private” versus the “public”. Based on the analysis of 41 qualitative interviews on Internet use by women living with HIV, the aim of the paper is twofold: to use the case of how people living with a chronic stigmatized illness go about seeking health information to develop a relational and spatial understanding of privacy; and to use this situated case to explore alternative methods for researching privacy as an embedded and highly contingent practice.

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Notes

  1. 1.

    Magdalena Berger et al. Internet use and stigmatized illness. Social Science & Medicine 61 (2005): 1821–1827.

  2. 2.

    Alan Westin, Privacy and Freedom (New York: Atheneum, 1970); Irwin Altman. The Environment and Social Behaviour (Belmont, California: Wadswirth Publishing Company, 1975); Ferdinand Schoeman, Privacy and Social Freedom (Cambridge: Cambridge University Press, 1992); Helen Nissenbaum, Privacy in Context (Stanford, California: Stanford University Press, 2009).

  3. 3.

    Ferdinand Schoeman. Privacy and Social Freedom (Cambridge: Cambridge University Press, 1992).

  4. 4.

    Barry Wellman and Caroline Haythornthwaite. The Internet in Everyday Life (Oxford: Blackwell, 2002); Leslie Haddon, Information and Communication Technologies in Everyday Life: A Concise Introduction and Research Guide (Oxford: Berg, 2004); Maria Bakardjieva, Internet Society: The Internet in Everyday Life (London: Sage, 2005).

  5. 5.

    Sarah Nettleton et al. “The mundane realities of the everyday lay use of the internet for health, and their consequences for media convergence.” Sociology of Health & Illness 27 (2005): 7; Joelle Kivits. “Researching the ‘Informed Patient’: The case of online health information seekers.” Information, Communication & Society 7 (2004): 4; Elizabeth Sillence et al. How do patients evaluate and make use of online health information? Social Science & Medicine 64 (2007): 1853–1862.

  6. 6.

    Eliot Freidson, “Client Control and Medical Practice.” The American Journal of Sociology 65 (1960): 4; David Mechanic. Medical Sociology (New York: Free Press, 1968); John B. McKinlay, “Social Networks, Lay Consultation and Help-Seeking Behavior.” Social Forces 51 (1972): 3; Annette Scambler et al. “Kinship and Friendship Networks and Women’s Demands for Primary Care.” Journal of the Royal College of General Practitioners 26 (1981): 746–750.

  7. 7.

    Shayna D. Cunningham et al. “Attitudes about sexual disclosure and perceptions of stigma and shame.” Sexually Transmitted Infections 78 (2002): 5; J. Dennis Fortenberry et al. “Relationships of stigma and shame to gonorrhea and HIV screening.” American Journal of Public Health 92 (2002): 3.

  8. 8.

    Magdalena Berger et al. “Internet use and stigmatized illness.” Social Science & Medicine 61 (2005): 1821–1827.

  9. 9.

    Health Protection Agency. “United Kingdom HIV New Diagnoses to end of June 2009,” page 7, New HIV Diagnoses National tables: Table 1, published in June 2009 and available online at: http://www.hpa.org.uk/web/HPAwebFile/HPAweb_C/1237970242135. Last accessed 23 January 2010.

  10. 10.

    Audrey Prost et al. “Social, Behavioural, and Intervention Research among People of Sub-Saharan African Origin Living with HIV in the UK and Europe: Literature Review and Recommendations for Intervention.” AIDS and Behavior 12 (2008): 2.

  11. 11.

    UK 2001 Census data, http://www.ons.gov.uk/census/index.html. Last accessed 12 March 2010.

  12. 12.

    For the sake of brevity from now on we will use the term African when we mean “black Africans.”

  13. 13.

    Department of Health. HIV and AIDS in African communities: A framework for better prevention and care. London, 2004.

  14. 14.

    Gill Green and Richard Smith. “The psychosocial and health care needs of HIV-positive people in the United Kingdom.” HIV Medicine 5 (2004): 1.

  15. 15.

    Jonathan Elford et al. “HIV in East London: ethnicity, gender and risk. Design and methods.” BMC Public Health 6 (2006): 150.

  16. 16.

    Gill Green and R. Smith. “The psychosocial and health care needs of HIV-positive people in the United Kingdom.” HIV Medicine 5 (2004): 1; Leslie Doyal and Jane Anderson, “My fear is to fall in love again” How HIV-positive African women survive in London. Social Science & Medicine 60 (2005): 1729–1738.

  17. 17.

    Leslie Doyal and Jane Anderson. “‘My fear is to fall in love again’ How HIV-positive African women survive in London.” Social Science & Medicine 60 (2005): 1729–1738.

  18. 18.

    Ibid.

  19. 19.

    Angelo A. Alonzo and Nancy R. Reynolds. “Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory.” Social Science & Medicine 41 (1995): 3; Paul Flowers et al. “Diagnosis and stigma and identity amongst HIV positive black Africans living in the UK.” Psychology & Health 21 (2006): 1; J. Dennis Fortenberry et al. “Relationships of stigma and shame to gonorrhea and HIV screening.” American Journal of Public Health 92 (2002): 3.

  20. 20.

    Valerian J. Derlega et al. “Perceived HIV-related stigma and HIV disclosure to relationship partners after finding out about the seropositive diagnosis.” Journal of Health Psychology 7 (2002): 4.

  21. 21.

    Kathryn Greene et al. Privacy and Disclosure of HIV in Interpersonal Relationships (New Jersey: Lawrence Erlbaum Associates, 2003).

  22. 22.

    Carole Pateman. The Disorder of Women (Stanford, California: Stanford University Press, 1989), 118.

  23. 23.

    Catharine MacKinnon. Toward a Feminist Theory of the State (Cambridge, Mass: Harvard University Press, 1989).

  24. 24.

    Anita Allen. Uneasy Access: Privacy for Women in a Free Society (Totowa, New Jersey: Rowman and Littlefield, 1988).

  25. 25.

    Catharine MacKinnon. Toward a Feminist Theory of the State (Cambridge, Mass: Harvard University Press, 1989).

  26. 26.

    Ibid.

  27. 27.

    Samuel Warren and Louis Brandeis. “Right to Privacy.” Harvard Law Review 193 (1890).

  28. 28.

    There are many different versions of what privacy is, of which these are only two. In selecting these we am not suggesting that this is all that privacy entails, but simply that these versions of privacy emerged as particularly appropriate in the context of this research.

  29. 29.

    Irwin Altman. The Environment and Social Behaviour (Belmont, California: Wadswirth Publishing Company, 1975).

  30. 30.

    Helen Nissenbaum. Privacy in Context (Stanford, California: Stanford University Press, 2009).

  31. 31.

    Sandra S. Petronio. Boundaries of Privacy (Albany, New York: State University of New York Press, 2002); Kathryn Greene et al. Privacy and Disclosure of HIV in Interpersonal Relationships (New Jersey: Lawrence Erlbaum Associates, 2003).

  32. 32.

    Sandra S. Petronio. Boundaries of Privacy (Albany, New York: State University of New York Press, 2002); Jonathan Elford et al. “Disclosure of HIV status: the role of ethnicity among people living with HIV in London.” Journal of Acquired Immune Deficiency Syndromes 47 (2008): 4; Rosalie Corona et al. “Do Children Know Their Parent’s HIV Status? Parental Reports of Child Awareness in a Nationally Representative Sample.” Ambulatory Pediatrics 6 (2006): 3; Martha B. Lee and Mary Jane Rotheram-Borus. “Parents’ disclosure of HIV to their children.” AIDS 16 (2002): 16; Valerian J. Derlega et al. “Perceived HIV-related stigma and HIV disclosure to relationship partners after finding out about the seropositive diagnosis.” Journal of Health Psychology 7 (2002): 4.; Kathryn Greene et al. Privacy and Disclosure of HIV in Interpersonal Relationships (New Jersey: Lawrence Erlbaum Associates, 2003).

  33. 33.

    Helen Nissenbaum. Privacy in Context (Stanford, California: Stanford University Press, 2009).

  34. 34.

    Alan Westin. “Social and Political Dimensions of Privacy.” Journal of Social Issues 59 (2003): 2

  35. 35.

    Anne Adams and Martina Angela Sasse. “Privacy in Multimedia Communications: Protecting Users, Not Just Data.” In People and Computers XV – Interaction without frontiers, edited by Ann Blandford, Jean Vanderdonckt and Philip D. Gray (Lille: Springer, 2001), 49–64.

  36. 36.

    Alessandro Acquisti and Jens Grossklags. “Losses, gains, and hyperbolic discounting: An experimental approach to information security attitudes and behavior.” 2nd Annual Workshop on Economics and Information Security- WEIS’03 (2003); Kai-Lung Hui et al. The value of privacy assurance: A field experiment. MIS Quarterly 31 (2007): 1.

  37. 37.

    Denise Anthony et al. “Privacy in Location-Aware Computing Environments.” IEEE Pervasive Computing 6 (2007): 4

  38. 38.

    Carina Paine et al. “Internet users’ perceptions of privacy concerns and privacy actions.” International Journal of Human-Computer Studies 65 (2007): 526–536.

  39. 39.

    Adam Joinson et al. “Measuring self-disclosure online.” Computers in Human Behavior 24 (2006): 5.

  40. 40.

    Carina Paine et al. “Internet users’ perceptions of privacy concerns and privacy actions.” International Journal of Human-Computer Studies 65 (2007): 526–536.

  41. 41.

    Helen Nissenbaum. “Privacy as Contextual Integrity.” Washington Law Review 79 (2004): 119–157.

  42. 42.

    Arthur Kleinman. The illness narratives: Suffering, healing, and the human condition (New York: Basic Books, 1988); Arthur Frank. The wounded storyteller: Body, Illness and Ethics (Chicago: University of Chicago Press, 1995); Michael Bury. “Illness narratives: fact or fiction.” Sociology of Health and Illness 23 (2001): 3.

  43. 43.

    For a historical description of how this has changed within British general practice see David Armstrong. “Space and Time in British General Practice.” Social Science & Medicine 20 (1985): 7.

  44. 44.

    All names have been changed as have any details that could indicate the identity of the women who took part in the research.

  45. 45.

    Name of hospital referred to changed.

  46. 46.

    Robin A. Kearns and Alun E. Joseph. “Space in its place.” Social Science & Medicine 37 (1993): 6.

  47. 47.

    Ferdinand Schoeman. Privacy and Social Freedom (Cambridge: Cambridge University Press, 1992).

  48. 48.

    Catharine MacKinnon. “Feminism, Marxism, Method, and the State.” Signs 8 (1983): 656–657.

  49. 49.

    Catharine MacKinnon. Toward a Feminist Theory of the State (Cambridge, Mass: Harvard University Press, 1989), 190.

  50. 50.

    Angela A. Alonzo and Nancy R. Reynolds. “Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory.” Social Science & Medicine 41 (1995): 3.

  51. 51.

    All healthcare practitioners’ names have been changed.

  52. 52.

    Stuart Shapiro. “Places and Spaces: The Historical Interaction of Technology, Home, and Privacy.” Information Society 14 (1998): 14.

  53. 53.

    Christine Milligan. “Location or dis-location?” Social & Cultural Geography 4 (2003): 4.

  54. 54.

    Adam Joinson et al. “Measuring self-disclosure online.” Computers in Human Behavior 24 (2006): 5, 242.

  55. 55.

    Stuart Shapiro. “Places and Spaces: The Historical Interaction of Technology, Home, and Privacy.” Information Society 14 (1998): 14.

  56. 56.

    National Aids Manual. http://www.aidsmap.com. Last accessed 2 November 2009.

  57. 57.

    http://www.nhs.uk/Pages/HomePage.aspx. Last accessed 2 November 2009.

  58. 58.

    http://www.i-base.info/. Last accessed 2 November 2009.

  59. 59.

    http://www.avert.org/. Last accessed 2 November 2009.

  60. 60.

    http://www.thebody.com/. Last accessed 26 May 2010.

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Acknowledgments

The authors gratefully acknowledge support from the Engineering and Physical Sciences Research Council (grant EP/G002606/1). They would also like to thank all the patients whose generosity with their time and willingness to share their experiences made this research possible. Considerable support was provided by staff working at the Homerton, Newham and Barking hospital departments of sexual health whose contribution and commitment were essential for this project; in particular Dr. Jane Anderson. Thanks to Noortje Marres for her valuable input on an earlier draft of this paper. The research was carried out with ethical approval from the Outer North East London Research Ethics Committee (reference 08/H0701/75).

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  1. Oxford Internet Institute, The University of Oxford, Oxford, UK

    Fadhila Mazanderani & Ian Brown

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  1. Fadhila Mazanderani
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Correspondence to Fadhila Mazanderani .

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  1. Law, Science, Technology & Society, (LSTS), Vrije Universiteit Brussels, Pleinlaan 2, Bruxelles, 1050, Belgium

    Serge Gutwirth

  2. Research Centre for Information, Technology & Law, University of Namur, Rempart de la Vierge 5, Namur, 5000, Belgium

    Yves Poullet

  3. Center for Law, Science, Technology, and Society Studies (LSTS), Vrije Universiteit Brussel, Pleinlaan 2, Brussels, 1050, Belgium

    Paul De Hert

  4. , TILT, Tilburg University, Warandelaan 2, Tilburg, 5037 AB, Netherlands

    Ronald Leenes

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Mazanderani, F., Brown, I. (2011). Privacy as a Practice: Exploring the Relational and Spatial Dynamics of HIV-Related Information Seeking. In: Gutwirth, S., Poullet, Y., De Hert, P., Leenes, R. (eds) Computers, Privacy and Data Protection: an Element of Choice. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-0641-5_12

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