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First published December 19, 2007

“You've Got it, You May Have it, You Haven't Got it”: Multiplicity, Heterogeneity, and the Unintended Consequences of HIV-related Tests


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. 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. 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. These user positions are noted here, but they are not the focus of this article. See Epstein (1996).
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. 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.


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Published In

Article first published: December 19, 2007
Issue published: January 2009


  1. health consumers
  2. co-construction
  3. HIV-related tests

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Published online: December 19, 2007
Issue published: January 2009



Kevin P. Corbett
Unit 7, 1-10 Summers Street, Clerkenwell, London EC1R 5BD, United Kingdom, [email protected]

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