“You've Got it, You May Have it, You Haven't Got it”: Multiplicity, Heterogeneity, and the Unintended Consequences of HIV-related Tests
Abstract
This article considers the experiences of health consumers who have undergone testing for human immunodeficiency virus (HIV) antibodies, T cells, and viral load. These HIV-related tests are deployed for the purposes of making definitive diagnoses; yet some test consumers experience ambiguous outcomes. Drawing on an analysis of differing end-user experiences of these tests, where consumers' knowledge reflected the multiplicity and heterogeneity in test design, the author explores how these experiences reflect particular knowledges about these tests. The article contributes to efforts analyzing how health consumers are active end users co-constructing the social meaning of technologies in mutual relationship with other users. The author discusses how this new knowledge can be used to delineate a greater role for consumer evaluation of medical testing within a broader understanding of test design and performance. Relevant links are made to issues such as genetic testing and assessing claims about the efficacy of medical tests.
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1.
1. This use of the term testing adapts Hanson's (1993, 19) definition: a representational technique applied by a medical end user on behalf of a health consumer end user for purposes of information gathering.
2.
2. The balancing of sensitivity/specificity of tests in testing algorithms/protocols limits heterogeneity and multiplicity; yet the latter persist, as they are intrinsic to test design (see Gigerenzer, Hoffrage, and Kleinbolting 1998, 199; National Screening Committee 1998, 9).
3.
3. These user positions are noted here, but they are not the focus of this article. See Epstein (1996).
4.
4. Research suggests data published by test manufacturers included within their test kits are not routinely given to health consumers (Gigerenzer et al. 1998).
5.
5. Gallagher (2005) describes how one male U.K. health consumer was diagnosed HIV positive and then later judged to be HIV negative after subsequent and successive negative test results. Although available data suggest the initial diagnosis was a false positive (AVERT 2007), U.K. regulators informed the user that this was not so. Indeed, by declaring his experience “exceptional” and also by implying that he had “recovered” from HIV infection (National Health Service Litigation Authority 2005)—which is an oxymoron in respect to any orthodox concept of HIV as a lifelong retroviral infection—regulators were apparently contradictory in their responses. This had the effect of deflecting public attention away from the reality of there being false positive diagnoses created by the national screening program, with media coverage concentrating on the “inexplicable” recovery from HIV infection instead.
References
Abbott Axsym System. 1995. HIV-1/HIV-2 human immunodeficiency viruses (HIV-1/HIV-2): (Recombinant antigens and synthetic peptides). Abbott Park, IL: Abbott Laboratories, Diagnostic Division.
---. 1998. HIV-1/HIV-2 human immunodeficiency viruses (HIV-1/HIV-2): (Recombinant antigens and synthetic peptides). Abbott Park, IL: Abbott Laboratories, Diagnostic Division.
Abbott Laboratories. 1997. Human immunodeficiency virus type 1. Immunoassay for the detection of antibody to human immunodeficiency virus type 1 (HIV-1) in human serum or plasma. Abbott Park, IL: Abbott Laboratories, Diagnostic Division .
Akrich, M. 1992. The de-scription of technical objects. In Shaping technology/building society: Studies in sociotechnical change, edited by W. B. Bijker and J. Law, 205-24. Cambridge, MA: MIT Press.
Akrich, M., and B. Latour. 1992. A summary of a convenient vocabulary for the semiotics of human and nonhuman assemblies. In Shaping technology/building society: Studies in sociotechnical change, edited by W. B. Bijker and J. Law, 259-64. Cambridge, MA: MIT Press.
Avert. 2007. Andrew Stimpson: The man "cured" of HIV. http://www.avert.org/stimpson.htm (accessed in June 2007).
Ball, S. 2000. Clinical challenge: Understanding HIV test results. The AIDS Reader 10 (5): 265-7.
Balmer, S., A. Bowens, E. Bruce, H. Farrar, C. Jenkins, and R. Williams. 2000. Quality management for screening: Report to the National Screening Committee. Leeds, UK: Nuffield Institute for Health, University of Leeds.
Barbot, J., and N. Dodier. 2002. Multiplicity in scientific medicine: The experience of HIVpositive patients. Science, Technology, & Human Values 27 (3): 404-40.
Bartlett, J. 1998. Medical management of HIV infection. Baltimore, MD: Johns Hopkins University School of Medicine .
Blattner, W. 1989. Retroviruses. In Viral infections of humans, edited by A. S. Evans, 545-92. 3rd ed. New York/London: Plenum.
Bouchard, L., I. Blancquaert, F. Eisinger, W.D. Foulkes, G. Evans, H. Sobol, and C. Julian-Reynier . 2004. Prevention and genetic testing for breast cancer: Variations in medical decisions. Social Science and Medicine 58:1085-96.
Brey, P. 1997. Philosophy of technology meets social constructivism: A shopper's guide. Techne: Journal of the Society of Philosophy and Technology 2 (3-4): 56-79.
Buhl, F. 2005. San Francisco data cast doubt on oral HIV test. PlanetOut Network, San Francisco. http://www.planetout.com (accessed on December 9, 2005).
Caron-Flinterman, J.F., J.E.W. Broerse, and J.F.G. Bunders. 2007. Patient partnership in decision-making on biomedical research: Changing the network. Science, Technology, & Human Values 32 (3): 339-69.
Casper M., and A. Clarke. 1998. Making the pap smear into the right tool for the job: Cervical cancer screening in the United States, circa 1940-1995 . Social Studies of Science 28 (2/3): 255-90.
Centers for Disease Control and Prevention. 1993. Revised classification system for HIV infection and expanded surveillance case definition for AIDS among adolescents and adults. Morbidity and Mortality Weekly Review 41 (RR-17): 1-35.
---. 1997. 1997 revised guidelines for performing CD4+ T-cell determinations in persons infected with human immunodeficiency virus (HIV). Morbidity and Mortality Weekly Review 46(RR-2): 1-29.
Cho, M.K., M. Arruda, and N.A. Holtzman. 1997. Educational material about genetic tests: Does it provide key information for patients and practitioners? American Journal of Medical Genetics 73:314-20.
Clarke, A. 2005. Situational analysis. Grounded theory after the postmodern turn. London: Sage.
Corbett, K. 2001a. Reazoni del publico ai controlli sanitari a scopo diagnostico [Exploring the continuum in public response-styles to medical screening for disease]. In La medicina la psicanalisi la vita. Milan: Il secondo rinacimento [The second renaissance : Medicine, psychoanalysis, life], edited by A. Verdiglione, 199-220. Milan, Italy: Logica E Industria Della Parolam, Spirali/VEL.
---. 2001b. Contesting AIDS/HIV: The lay reception of biomedical knowledge. Unpublished PhD diss. London: London South Bank University.
Crossley, M. 1998. "Sick role" or "empowerment"? The ambiguities of life with an HIV diagnosis. Sociology of Health & Illness 20 (4): 507-31.
Epstein, S. 1996. Impure science: AIDS, activism and the politics of knowledge . Berkeley: University of California Press.
Fauvel, J. 1988. AIDS culture. Science As Culture 7:43-68.
Fielding, N. 2004. Getting the most from archived qualitative data: Epistemological, practical and professional obstacles. International Journal of Social Research Methodology 7 (1): 97-104.
Flynn, M. 1998. It's not over. Body Positive Newsletter: The UK's Longest-running Newsletter for People Living with HIV and AIDS 222 (April): 5.
Gabrish-Conlan, M. 1995. Christine Maggiore: HIV-"Seroequivocal" woman to speak in San Diego Sept.19. Zenger's Alternative Lifestyles, Politics, Culture and Health 14 (September): 8-13.
Gallagher, I. 2005. First man in world to beat HIV virus. The Mail on Sunday November 13, 6-7.
Genelabs Diagnostics. 2004. HIV BLOT 2.2 Western blot assay. Singapore: Genelabs Diagnostics.
Gigerenzer, G. 2003. Calculated risks: How to know when numbers deceive you . London: Simon & Schuster.
Gigerenzer, G., U. Hoffrage, and H. Kleinbolting . 1998. AIDS counselling for low risk clients, AIDS Care 10:197-211.
Hanson, A.F. 1993. Testing testing. Social consequences of the examined life . Berkeley: University of California Press.
Heaton, J. 2004. Reworking qualitative data. London : Sage.
Her Majesty's Stationery Office. 1992. The HIV testing kits and services regulations. Statutory instrument no. 460 . London: Her Majesty's Stationery Office.
Houston, D., G. Lloyd, S. Drysdale, and M. Farmer. 2001. The benefits of uncertainty: Changes in women's perceptions of the cervical screening programme as a consequence of screening errors by Kent and Canterbury NHS Trust. Psychology, Health and Medicine 6 (2): 107-113.
Keating, P., and A. Cambrosio. 2003. Biomedical platforms. Realigning the normal and the pathological in late-twentieth century medicine. Cambridge, MA: MIT Press.
Latimer, J., K. Featherstone, P. Atkinson, A. Clarke, D. Pilz, and A. Shaw. 2006. Rebirthing the clinic: The interaction of clinical judgment and genetic technology in the production of medical science . Science, Technology, & Human Values 31 (5): 599-630.
Lyall, C., A. Bruce, J. Firn, M. Tait, and J. Tait. 2004. Assessing end-use relevance of public sector research organisations. Research Policy 33 (1): 73-87.
Maggiore, C. 2000. What if everything you thought you knew about AIDS was wrong? 4th ed. Studio City, CA : American Foundation for AIDS Alternatives.
Mensah, M. 2000. Screening bodies, assigning meaning: ER and the technology of HIV testing. In Wild science: Reading feminism, medicine and the media, edited by J. Marchessaut and K. Sawchuk, 139-50. London, Routledge.
Moore, A., C. Candlin, and G. Plum. 2001. Making sense of HIV-viral load: One expert or two? Culture, Health and Sexuality 3 (4): 429-50.
Moore, O. 1996. PWA Looking Aids in the face. London : Picador.
Mortimer, P. 1988. The AIDS virus and the HIV test. Medicine International 56: 2334-9.
Mylonakis, E., M. Paliou, T. Greenbough, and T. Flanagan. 2000. Report of a false positive HIV test result and the potential use of additional tests in establishing HIV status . Archives of Internal Medicine 160 (15): 2386.
National AIDS Manual Publications. 1997. Treatment directory. London: National AIDS Manual Publications.
---. 2007. Viral load. www.aidsmap.com/cms1043815.asp (accessed in June 2007).
National Health Service Litigation Authority. 2005. Letter to Andrew Stimpson, October 10. In First man in world to beat HIV virus, I. Gallagher. The Mail on Sunday, November 13, 7.
National Breast Cancer Coalition. 2006. Position statement on genetic testing for inherited predisposition to breast cancer. Updated April 2006. Washington, DC: National Breast Cancer Coalition. http://www.natlbcc.org (accessed on June 16, 2007).
National Screening Committee. 1998. National Screening Committee: Annual report. Milton Keynes, UK: National Screening Committee.
Organon Teknika Corporation. 1997. HIV-1 Western blot kit: An enzyme immunoassay for the detection of antibody to human immunodeficiency virus type 1 (HIV-1) in human serum or plasma [package insert for commercial test kit]. Durham, NC: Organon Teknika Corporation.
Oudshoorn, N., and T. Pinch. 2003. How users and non-users matter. In How users matter: The co-construction of users and technology, edited by N. Oudshoorn and T. Pinch, 1-25. Cambridge, MA: MIT Press.
Papadopulos-Eleopulos, E., V.F. Turner, and J.M. Papadimitriou . 1993. Is a positive Western blot proof of HIV infection? Bio/technology 11:696-707.
Papadopulos-Eleopulos, E., V.F. Turner, J.M. Papadimitriou, D. Causer, B. Hedland-Thomas, and B. Page. 1995. A critical analysis of the HIV-T4-cell-AIDS hypothesis Genetica 95:5-24.
Parthasarathy, S. 2003. Knowledge is power: Genetic testing for breast cancer and patient activism in the United States. In How users matter: The co-construction of users and technology, edited by N. Oudshoorn and T. Pinch, 133-50. Cambridge, MA: MIT Press.
Patton, C. 1990. Inventing AIDS. London: Routledge .
Rabinow, P. 1996. Making PCR. A story of biotechnology. Chicago: University of Chicago Press.
Race, K. 2001. The undetectable crisis: Changing technologies of risk . Sexualities 4 (2): 167-89.
Ratcliffe, M. 1997. The switch. The Newsletter of the British School of Shiatsu (Spring/ Summer): 10-11.
Roche Diagnostic Systems. 1996. AMPLICOR HIV-1 monitor test. Basel, Switzerland: Roche Diagnostic Systems.
Rosengarten, M., J. Imrie, P. Flowers, M. Davis, and G. Hart. 2004. After the euphoria: HIV technologies from the perspective of their prescribers. Sociology of Health & Illness 26 (5): 575-96.
Rowe, G., and L. Frewer. 2004. Evaluating public-participation exercises: A research agenda. Science, Technology, & Human Values 29 (4): 512-56.
Siegel, K., M. Levine, C. Brooks, and R. Kern. 1989. The motives of gay men for taking or not taking the HIV antibody-test. Social Problems 36 (4): 368-38.
Teo, I., and S. Shaunak. 1995. PCR in situ: Aspects which reduce amplification and generate false positive results. Histochemistry Journal 27:660-9.
Wilsdon, J., and R. Willis. 2004. See-through science. Why public engagement needs to move upstream. London: Demos.
Wong-Wylie, G., and R. Jevne. 1997. Patient hope: Exploring the interactions between physicians and HIV seropositive individuals. Qualitative Health Research 7 (1): 32-56.
Wynne, B. 1996. Misunderstood identities: Social identities and public uptake of science. In Misunderstanding science? The public reconstruction of science and technology, edited by A. Irwin and B. Wynne, 19-46. Cambridge : Cambridge University Press.
Young, I. 1995. The stonewall experiment. A gay psychohistory. London: Cassell.
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Article first published: December 19, 2007
Issue published: January 2009
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Published online: December 19, 2007
Issue published: January 2009
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