Abstract
This article examines the home rapid HIV test as a new practice of US biocitizenship. Via an analysis of discourse surrounding self-diagnostics, I conclude that while home HIV tests appear to expand consumer rights, they are in fact the vanguard of a new form of self-testing that carries a moral urgency to protect one’s own body and to manage societal risk. In addition, these tests extend biomedical authority into the private domain, while appearing to do the exact opposite. Furthermore, access to these tests may be stratified, contradicting the intent expressed by the manufacturer to reach populations in need of it most and reinforcing stigma against them. Lastly, diagnostics such as the rapid home HIV test represent new obligations for surveillance of one’s own health and that of others. The new public health effort to test the population at large has given rise to a new ‘risky’ population: the untested bodies.
On 3 July 2012, the US Food and Drug Administration (FDA), the government agency that regulates drugs and medical devices, announced approval of a rapid home HIV test, OraQuick by OraSure Technologies. This test, the first self-test for an infectious disease approved by the FDA, was said upon its release to be as easy to use as a home pregnancy test and was heralded as a ‘positive step forward’ in controlling the HIV/AIDS epidemic (McNeil, 2012a). The FDA approval of this test is a significant development, since for over twenty years the process of testing and returning HIV results in the US has remained under the jurisdiction of health care professionals and other authorized counselors. In addition, it has great potential for improving health outcomes via early detection and treatment.
Employing technology that has been utilized in medical settings in the US since 2004, the OraQuick test works via a mouth swab, which is placed in a vial of developer soution. After waiting 20 minutes, users read the results: one pink line indicates negative results, and two indicate that the test results are positive. Because it checks for HIV antibodies, there is a window-period after infection during which the test will not accurately detect HIV. 1 Hence, some have expressed concern about the ‘small, but open, portal to risk’ should the test be used to confirm status before engaging in activity that could transmit the virus (Fischer, 2012: 389). While material concerns about accuracy are crucial, the more provocative questions involve how this test, and home diagnostics in general, emerge in the market, and how they empower subjects at the individual and societal levels. If we take seriously Foucault’s claim (1982) that power is productive and generative, it becomes clear how these tests can indeed be empowering - self-diagnostics produce new forms of subjectivity, corporeal realities and practices of biocitizenship. While these tests have the potential to allow people more insight into their bodies outside of the medical setting, as Barbara Cruikshank notes: ‘the will to empower is neither clearly liberatory nor clearly repressive’ (1999: 72). In other words, empowerment is a form of radically conditioned agency that can be enabling and/or transformative, while at the same time shaped by discourse and medical authority. Hence, the question I am concerned with is not whether self-diagnostics are empowering, but instead what kinds of power they produce and support.
Via a discursive analysis of literature, product packaging, and marketing and public health rhetoric surrounding the home rapid HIV test, this article identifies several contested spaces that emerge within the context of the capitalist imperative of the United States bioeconomy. While home HIV testing appears to represent a de-medicalization of HIV testing, it also expands the reach of medical authority into the home while constituting new practices of biocitizenship. In addition, home HIV testing is part of a growing trend to identify the population that now poses the most risk – those who are unaware of their status. While the market is presumed to be democratic insofar as it is open to all, a closer analysis of the HIV self-test reveals that underneath its democratic impulse lies the potential to reinforce social stratification. The HIV self-test is not the first home diagnostic, nor is it the first time that individuals can receive their HIV test results anonymously at home. The home rapid HIV test represents the vanguard of a new form of self-diagnosis and monitoring – one that directly implicates not only the tested, but also their partners. Hence, while other self-testing and monitoring devices, such as those for pregnancy, have also been framed within the context of consumer choice and empowerment, the self-test for HIV is further framed as a moral obligation, as a tool for not only monitoring one’s body, but for managing risk within intimate relationships and for society as whole.
My analysis draws specifically from the work of Nikolas Rose (2007) on the biological citizen. This form of citizenship emphasizes the biological understanding of the body and human existence and the ways that understanding links individuals and distinguishes them from others. Continuous monitoring and optimization of one’s health, therefore, is expected from each biological citizen. Health promotion and education, in their various forms, constitute efforts to construct citizens from above, shaping the way they see their bodies and their obligations to themselves and those around them. However, Rose also notes that biological citizens are not solely constructed from above. The biocitizen appears to be actively involved in forming him/herself from below, via self-education, self-care and collectivizing action (2007: 144). Much of the literature to date on biocitizenship in relation to HIV emphasizes its collectivizing, active force and the formation of politically motivated biosocieties (for example, see Nguyen, 2008). However, my interests situate HIV self-testing as an individualizing act that, while entailing responsibilities to others, also serves as a dividing practice: one that divides the HIV negative from the positive and the tested from the untested, both at the individual and populations levels. In addition, I wish to address a particular form of biocitizenship that is often ignored: the inactive citizen.
Because of the relatively recent advent of this home test, empirical and ethnographic data regarding the actual prevalence of its use and impact on public health is limited. 2 Therefore, my analysis outlines theoretical possibilities that have not been fully supported by primary sources and user experience, and it relies heavily on aspects of biomedicalization theory (Clarke et al., 2010) and biocitizenship literature (Rose, 2007), while acknowledging their limitations. In addition, this article’s focus is limited to the potential use of the HIV self-test in the United States. While it has been suggested that unregulated tests are available in certain African and Asian countries (Pai et al., 2013: 11), at the time of this analysis the US is currently the only country in which an approved rapid home test is widely available. The case of the US is important in considering how the uptake of these tests may occur elsewhere, since the US approval has the potential to influence a new wave of home testing in other countries. Because these tests are not yet widely available to the general public in other countries, however, it is less clear what impact home testing will have internationally. 3
Home HIV Tests and the Construction of Biological Citizens
The concept of home HIV testing was first proposed to the FDA in 1986 (Millenson, 2006). 4 The FDA responded two years later by issuing guidance for acceptance of applications for HIV tests, restricting their use to health care settings and requiring that results be returned with appropriate counseling by health care professionals, in effect, prohibiting home testing. 5 In 1989, the FDA held the first public hearings to consider home HIV tests. Public response was overwhelmingly against home testing: several members of the US Congress, representatives from the Centers for Disease Control and Prevention (CDC), the American Medical Association, and even gay, lesbian, bisexual and trans-sexual (GLBT) activists strongly opposed it over concerns about accuracy and potential suicides as a result of learning of HIV positivity on one’s own. To highlight the latter concern, AIDS activists disseminated copies of an obituary of a man who committed suicide by jumping off the Golden Gate Bridge in San Francisco after learning he had HIV (Wright and Katz, 2006: 438). The general consensus was that citizens were not equipped to test or receive results on their own, given the intense stigma and relatively limited advancement in treatment and outcomes.
In the over two decades since, the landscape of HIV testing and treatment in the US has changed considerably. In 1996, the FDA reversed its stance and approved an over-the-counter home collection kit, whereby users would collect a blood sample, send it to a lab for analysis, and receive results and counseling over the phone, with appropriate referrals for positive results (Whellams, 2008: 6). In 2005, a coalition including many of the same interest groups that lobbied against home testing in 1989 (physicians, GLBT activists, public health officials, and manufacturer representatives) joined to testify before the FDA Blood Products Advisory Committee (BPAC) in support of rapid home tests (Wright and Katz, 2006: 437). In the seven years following, OraSure Technologies worked with the FDA to conduct required clinical trials and adapt product design to obtain approval for its product. The result, OraQuick, is currently the only rapid home test for HIV in the US approved by the FDA.
The first clearance of a rapid self-diagnostic, the home pregnancy test, was issued by the FDA in 1976. Historian Sarah Leavitt has linked the development and FDA approval of the home pregnancy test in the late 1970s to the women’s health movement. While many doctors and health officials dismissed the need for home pregnancy tests in the 1960s and early 1970s, Leavitt explains: ‘women found ways around these strictures and increasingly demanded access to private, personal, informed, and non-judgmental health care, of which the pregnancy test was a part’ (Leavitt, 2006: 327). Once abortion was made legal across the nation in 1973, women’s health organizations made arrangements to expand access to pregnancy testing outside of the doctor’s office and to make it more affordable. For example, members of the Chicago Women’s Liberation Union conducted pregnancy testing at various locations in the early 1970s outside of the clinical setting (Kline, 2010: 79). Consequently, when Warner-Chilcot submitted its application for the ‘e.p.t.’ (Early Pregnancy Test) to the FDA in 1976, it was meeting a demand that was clearly evident (Leavitt, 2006: 325).
It would appear that the home pregnancy test emerged as part of a citizen-driven movement, while private interests seem to have played a larger role in bringing the HIV self-test to market. In fact, in a critical assessment of corporate involvement in establishing FDA guidelines for rapid home HIV tests, Melissa Whellams (2008) notes that evidence of consumer demand was not a factor in deliberations. She argues that while proponents of rapid home HIV tests claimed that they were responding to consumer desire, it seems that there was minimal demand for the product, at least at the time of her analysis. What are we to make of the differences between how these two tests emerged? It is true that the dramatic shift in support for home HIV testing since the 1980s stems in part from advancement in treatments and the framing of HIV as a ‘chronic’ disease, as well as the public health push for the routinization of testing as I discuss below. However, this turn, in comparison with the pregnancy test, also demonstrates the proliferation of alliances between private (for-profit) entities and public interest groups (e.g. non-profit entities, government agencies, universities, community activist groups, etc.). Globally, private and public entities have converged in partnerships that seek medical innovations and new markets for these products. This has been tied to the growing influence of neoliberal thought since at least the early 1980s, which advocates for a greater role of private industries in what had traditionally been considered ‘public’ goods (Buse and Walt, 2000). Hence, it may no longer be possible to distinguish between corporate interests and public health discourse, particularly in the realm of medical devices and drugs. Yet the logics and motivations at work in these entanglements do not blend seamlessly, nor do they necessarily coincide. Critical analyses of self-diagnostics, therefore, must grapple with their potential benefits as well as their social costs. What are the implications of these assemblages that now bring self-diagnostics to market? What contested spaces do they open up and what does this mean for the role of corporations in generating desire for the conduct of biocitizenship? How are ‘private’ interests implicated in the moral and ethical landscape that biocitizens negotiate? While the answers to these questions are open to debate, the case of the home rapid HIV test can illuminate potential responses.
Testimony before the FDA BPAC in 2012 prior to the final recommendation of approval of the OraQuick test demonstrates the blurring of the private and public. During the open ‘public’ hearing section of the meeting, designed to give the public a voice in FDA decisions, individuals from organizations that ranged from HIV/AIDS advocacy groups to medical associations, state public health departments, academic institutions and religious groups expressed overwhelming support for the approval of the test. Of the 24 people who spoke, 13 disclosed financial relationships with OraSure, ranging from payment of travel costs to fiscal sponsorship, research partnerships, and educational grants. In addition to framing the home test as offering more choice and control to consumers, one representative from an AIDS activist group noted: ‘We are morally obligated – morally obligated – to bring these tests to market and stop the spread of HIV’ (BPAC, 2012: 207, italics mine). The ‘moral obligation’ is two-fold. First, consumer choice and autonomy is framed as a universal good, while any restriction of choice is framed as undesirable, if not unethical. If the FDA had refused to approve the test based on concerns about user competence, some have suggested that it would have been viewed as paternalistic and as denying choice or freedom (Whellams, 2008: 9). The idea here is that expanding testing options would increase the number of people who are aware of their status, but this strengthening of consumer choice is also in line with neoliberal ideology that aims to open markets and promote private profits (McGregor, 2001: 87). Second, as I will discuss further below, the moral and social responsibility of HIV testing implicates biocitizens who are expected to self-monitor in order to improve their own health and to minimize the risk posed to others. Nevertheless, the expansion of testing options is also inexorably linked to the relationship of biocitizens to medical authority.
Symbolic Demedicalization
Despite the very different implications of HIV testing and pregnancy testing (i.e. an infectious disease vs. pregnancy, a non-pathological condition), it is remarkable how similarly these home tests have been framed by the manufacturer and the media. Upon its approval, the home pregnancy test was heralded as a ‘breakthrough in home diagnostics’ and ‘a private little revolution’ (Leavitt, 2006: 325). Referencing the ‘breakthrough’ of HIV home rapid testing, the CEO of OraSure noted:
for the first time ever individuals will be able to use the same test that healthcare professionals have used and trusted for years and this will empower them to learn their HIV status in the comfort and privacy of their own home.
5
This framing, of course, is not unique to pregnancy tests or home HIV tests; the supposition underlying self-diagnostic tests in general, evident from their marketing materials, is that they help consumers to become more self-directed and active in evaluating and managing their health (Greaney et al., 2012: 383). Therefore, a contested space has evolved with the emergence of home and direct to consumer diagnostics: from one perspective they appear to relocate subjects outside of medical control (i.e. demedicalization), while from another view they seemingly reinforce medicalization. Rapid HIV testing in the privacy of one’s home represents a new option for the biological citizen, in light of the previous restriction to the clinical or counseling domain. Now, those who purchase home kits are conferred the right to collect and test their own samples, effectively assuming the role of clinicians and public health workers. However, we cannot speak of rights within the context of neoliberal biocitizenship without recognizing that these rights come deeply entangled with obligations to one’s own body and to society. The evolution of biological citizenship involves a gradual extension of rights whereby processes traditionally seen as part of medical control and authority are relocated outside of that domain. In the US, this phenomenon occurs within the FDA and state regulatory framework. An alternative method involves defining (or redefining) such tests as nonmedical. For example, in response to cease and desist letters from the California and New York public health departments, several companies claimed that their genetic tests were not medical tests, but ‘personal genetic services’, and as such, were able to operate without direct involvement of physicians (Pollack, 2008). Thus, one might claim that these movements represent demedicalization (Conrad, 1992: 226).
On the other hand, if the home pregnancy test has taught corporations anything, it is that consumers will pay for a technology that empowers them to enter medical care earlier. In her study of the medicalization of reproduction, Andrea Tone (2012: 325) argues that instead of reversing medicalization, the home pregnancy test led users to seek medical intervention, in the form of either an abortion, prenatal care, or, in the case of some negative results, assisted reproduction technologies. Sarah Leavitt’s analysis arrives at a similar conclusion:
The pregnancy test does not reduce their reliance on doctors, and prenatal care in the late twentieth century involved more and more testing and more incursions of technology. The pregnancy test is the first step: each positive result will lead to the woman’s interaction in some manner with the health-care establishment, whether doctors, midwives, nurses, or other professionals.… The home pregnancy test relocates the beginning of the long relationship with doctors that a pregnancy brings. (2006: 330, italics mine)
In a similar way, the movement of HIV testing to the privacy of the home represents what Conrad terms ‘symbolic demedicalization’ (1992: 225). It is conceivable that a subject would attempt to ‘escape’ the public health surveillance apparatus by testing at home. In fact, this was a concern raised at the initial 2005 FDA hearings (Campbell and Klein, 2006). This is unlikely, however. The home rapid HIV test does not move the subject outside of medical authority or public health surveillance; the packaging clearly indicates: ‘A positive result with this test does not mean that you are definitely infected with HIV, but rather that additional testing should be done in a medical setting.’ Furthermore, it specifies: ‘A negative result with this test does not mean that you are definitely not infected with HIV, particularly when exposure may have been within the previous 3 months.’ In the home HIV test, therefore, consumers are not paying for a definitive diagnosis – instead they are paying for the feeling of knowing and being empowered that self-testing provides. Thus, the message is clear: like the pregnancy test, the hope is that the point of contact with the health care system and biomedical intervention will be moved to the earliest point possible after HIV infection. In theory, this will improve health outcomes for the biological citizen. Nevertheless, access to this improvement may not be uniform.
Stratified Biomedicalization
While every biological citizen is expected to participate actively in monitoring and improving his or her body, the methods for doing this are not accessible to all. Technoscientific developments target specific populations, by nature of their design, price, demographic fit, or other factors. Clarke and her colleagues recognize this as ‘stratified biomedicalization’, by which they mean that ‘many people are completely bypassed, others impacted unevenly, and while some protest excessive biomedicalization intervention into their lives, others lack basic care’ (Clarke et al., 2010: 61). As in the case of HIV testing, certain bodies and identities are seen as needing technologies by virtue of their ‘risky’ behaviors and lifestyles (Clarke et al., 2010: 83). Even within these ‘risky’ groups, those who do not participate, for whatever reason, in the technologies of health, are often excluded or deemed morally deficient (Rose, 2007: 25). While the manufacturer of the OraQuick test aims to market to those perceived at higher risk, including gay men and minorities (McNeil, 2012a), a major concern is that the rapid home HIV test will exclude a large section of that population because the cost will be prohibitive. While historically the HIV/AIDS epidemic in the US has affected MSM (men who have sex with men) and other ‘high-risk’ groups (e.g. intravenous drug users and commercial sex workers) at greater rates, recent studies have shown that it currently disproportionately affects economically impoverished urban populations (Denning and DiNenno, 2010). As Paltiel and Pollack (2010) observe, HIV testing is unique in that the people at highest risk and thus at greater need for testing may be populations that have the least resources to pay for it. Thus, they argue that the FDA should have considered price as a specific criterion for approval, perhaps requiring a subsidy or tiered pricing system to ensure that benefits are maximized, instead of focusing only on accuracy and safety.
Testimony presented during a 2005 FDA advisory meeting cited a pilot study that showed $15 was the upper price limit to purchase a rapid test in a sample of 240 patients with HIV (Wright and Katz, 2006: 440). A more recent study presented at a 2012 meeting showed that in a sample of 108 men who have sex with men, 45% would not pay more than $20 for the test (Willyard, 2012). Upon its release, the OraQuick test was priced at approximately $40. A 2006 editorial in Annals of Internal Medicine identified specific groups to which the authors believed the test would appeal: the affluent, the ‘worried well’, new couples, and people with recent high-risk exposure (Walensky and Paltiel, 2006). The chief executive of amfAR commented: ‘If the people who go out and pay for this test end up being sorority girls who had a one-night stand and worry if they’re infected, that’s not going to be a net positive’ (Duncan, 2012). Analysis presented to the FDA BPAC in 2012 claimed that the OraQuick home test could potentially detect 45,000 new HIV cases and avert 4000 new infections each year in the US (Willyard, 2012). OraQuick tests are currently available online and in 30,000 outlets (including pharmacies, grocery stores, and Wal-Mart) throughout the US (www.oraquick.com), in theory available anywhere to anyone. While an analysis of the full OraQuick marketing plan is outside the scope of this article, it is worth noting that Magic Johnson, former professional basketball star and HIV activist, has been hired as a spokesperson in an effort to target the African American community (Anderson, 2012). However, if many of those deemed at risk for HIV cannot purchase this test due to limited resources, if indeed this results in stratified biomedicalization, there will be a significant disconnect between the claims that justified its approval and its actual effects in reducing the incidence of HIV/AIDS and detecting new cases. Rose summarizes the dilemma: ‘not all have equal citizenship in this biological age’ (2007: 132). 7
Risk and the Untested Body
As Deborah Lupton has observed, the contemporary meaning of ‘risk’ as ‘danger’ permeates public health discourse and serves as ‘an effective Foucauldian agent of surveillance and control that is difficult to challenge because of its manifest benevolent goal of maintaining standards of health’ (1993: 432–433). The discourse surrounding HIV is ripe with references to risk, levels of risk, and those at risk. In 2006, the CDC revised its recommendations in an effort to routinize HIV testing. Specifically, it recommended general screening of patients in health care settings, testing of all pregnant women unless they opt out, and, most notably, removed the requirement for pre- and post-test counseling. The current guidelines state: ‘the effectiveness of using risk-based testing to identify HIV-infected persons has diminished’ (Branson et al., 2006). While this revision may appear to reduce the role of risk in HIV public health discourse, the alternative interpretation is that everyone is at risk. Petersen and Lupton observe that the new public health focus on the ‘environment’ (as broadly defined) serves to disband the categories of ‘healthy’ and ‘unhealthy’ populations; instead, ‘everything potentially is a source of “risk” and everyone can be seen to be “at risk”’ (1996: 195). The focus of contemporary public health efforts to reduce the incidence of HIV, therefore, has shifted to testing the general population in order to reduce transmission by earlier treatment and identification of seropositive individuals. This expansion of the at-risk population serves both the interests of organizations charged with protecting public health (e.g. the CDC) and companies that manufacture these tests, under the guise of achieving ‘health for all’.
The framework of biological citizenship traditionally emphasizes the active nature of the neoliberal subject. However, practices of biocitizenship are not uniform. While the population in general has been identified as at risk for HIV, the most ‘risky’ bodies now are those who have not been tested, those who have not fulfilled their duties as biological citizens in actively monitoring their status. These subjects comprise a specific category of biocitizens: the ‘untested bodies’. These untested bodies are simultaneously at risk while posing a risk. By not monitoring their HIV status and abandoning the obligation to constantly assess and improve their health, the untested citizens pose a threat to the community of active, informed biological citizens who are aware of their status. Much of the impetus and justification for the OraQuick test centered around evidence collected by the CDC which showed that approximately one in five people in the US who have HIV do not yet know it. Thus, the test would theoretically reach those who for whatever reason have not submitted to a clinical test (e.g. those who do not divulge risky practices to their doctors, those with limited access to health care, or those in rural areas without HIV testing centers) (Arnold, 2012). The efforts to reach these untested bodies can be seen as an attempt to rehabilitate biological citizens, in a sense, to bring them back into the fold of the ‘regime of self’ as actively taking responsibility for their health (Rose, 2007: 154). The status of the ‘untested body’ may be transitory. One may test negative and then engage in a risky activity (e.g. unprotected sex or needle sharing), thus returning to the status of the ‘untested’. However, awareness of one’s HIV status is simply the beginning stage of a self-maintenance regime. While those who test negative (and society in general) are encouraged to take specific steps (e.g. practice safer sex, avoiding sharing needles, etc.) to minimize the risk of contracting HIV, those who test positive are directed by counselors and health care professionals to take steps to minimize the effects of the disease on their bodies and the chance of passing it on to others (e.g. beginning antiretroviral treatment, practicing safer sex, disclosing status to partners) (Petersen and Lupton, 1996: 70).
Yet when we consider the potential for stratification of access to HIV self-tests, a paradox emerges: while discourse regarding the untested bodies emphasizes their rehabilitation via self-testing, it is probable that a large sector of this class of biocitizens will find the cost prohibitive. It is within this context that the involvement of corporate capitalism and its fusion with biomedicine and public health gets caught up with the shaping of citizen practices and moral systems. While the biomedical and public health endeavors may claim their goal as the objective promotion of human well-being, corporate capitalism appears to eschew a moral valence in its pursuit of profit. However, this assemblage has the potential of reinforcing a moral system that already deems the untested as irresponsible biocitizens. If indeed many of the untested cannot afford to self-test (and have not found other means of testing feasible), then they may be further ostracized due to their seeming dereliction of citizenship duties. Because of its apparent ease of use, immediate results, wide availability, and privacy, the home rapid HIV test is positioned as a technology that can be understood and used by anyone. A recent national TV ad for the test declared: ‘It’s not a black thing, it’s not a white thing, it’s not a gay thing, it’s not a straight thing. Testing for HIV is everyone’s thing’ (OraSure, 2012). Now, it seems that there is no valid excuse not to be tested. Public health research conducted in the US prior to OraQuick’s approval pointed to the over-the-counter rapid HIV test as a promising tool to increase testing rates among untested MSM, even among those with low intentions to get tested (MacKellar et al., 2011). While many of the untested reported that they would use a home rapid test if it were available, cost was not factored into the question. Consequently, an ostensibly democratizing technology may reinscribe social stigma on these bodies because it is priced outside of their range. As James Morone has observed:
The myth of a liberal society makes it easy to overlook moral boundaries and the ways we use them.… Apparent efforts to improve public health – alcohol prohibition, drug wars, campaigns against sexually transmitted diseases – often turn into ways of dividing American society, of sorting out the moral us from the threatening them. (1997: 1015)
The vital moral obligation to oneself and others of HIV testing makes the moral divide between the tested and untested even more concerning and is what differentiates the HIV home test from other over-the-counter diagnostics. Neither the home pregnancy test nor direct-to-consumer genetic testing can claim the same moral urgency.
Surveillance and Acts of Biocitizenship
Techniques for self-surveillance have proliferated in recent years, from online risk-assessment tools to more dynamic self-monitoring systems and online communities such as the ‘Quantified Self’, in which self-trackers discuss their experiences monitoring minute details such as weight, blood pressure, calories, heart rates, and menstrual cycles (Bethge, 2012). However, public health discourse is not only concerned with self-development and self-surveillance – protecting one’s health also involves the surveillance of others. Anti-smoking campaigns have urged citizens to not only stop smoking themselves, but to monitor others, to protect ‘the masses from “other people’s smoke,” for example by insisting that others do not smoke inside one’s house’ (Petersen and Lupton, 1996: 69). The purpose of this surveillance of others is both self-interest and the interest of the community. Health monitoring of others has entered private spaces and rituals, even those considered to be ‘risky’ domains. For example, in a European study of the effects of safe-sex promotion (Pryce, 2000) one interviewee who worked as a bouncer at an S/M leather club noted that staff policy was to exclude members who were observed engaging in ‘deviant’ (i.e. unsafe) practices. The author concludes: ‘A socially and sexually “deviant” group were policing themselves to ensure members did not deviate from the “liberal” rhetoric of health promotion’ (Pryce, 2000: 108). Yet as Annemarie Mol points out, while hegemonic health discourse may seem totalizing, ‘(medical) science does not have the power to impose its order on society’ (2002: 62). Instead, she argues, if it succeeds, it is because actors in society take it up (or adopt what suits their needs), forming new networks and associations.
Rapid over-the-counter HIV tests may also serve as a tool by which consumers can ‘police’ others while acting out of self-interest. Though not advertised by the manufacturer as a potential use, some have advocated using the test to screen potential partners. Of the 4000 participants in the clinical trials conducted before OraQuick’s approval, 70% indicated that they would definitely or very likely use it in this manner (McNeil, 2012b). The experience reported in a US news outlet shortly after the release of the HIV self-test, illustrates this dynamic:
Dan Nainan had never heard of a home test for HIV until a prospective girlfriend insisted that he take one. Apparently, she didn’t trust him. ‘I’m not some sleaze bag, but she’s really suspicious,’ said Nainan, 31, who works as a comedian. ‘I’m like, “Come on, you’re kidding me.”’ The test became a sticking point in their budding relationship. ‘I didn’t feel I had anything to be worried about,’ Nainan said, ‘but she didn’t want to proceed.’ He finally gave in and took the test his girlfriend foisted on him, certain he’d test negative.… ‘I felt like I was taking a pregnancy test,’ Nainan said. (Halperin, 2012)
One recent study conducted in New York City (Carballo-Diéguez et al., 2012) investigated the utility of partner screening with the new rapid HIV test in a population (N = 27) of HIV-negative men who have sex with men (MSM) who regularly had unprotected sex with multiple partners. The expectation was that if a potential partner tested positive for HIV, subjects would refrain from unprotected sex. Subjects were given test kits to use before sexual encounters and were monitored for three months. During the course of the study, 100 partners were tested and 10 tested positive (6 of whom were previously unaware of their status). While the authors claim that ‘very few problems occurred’, they also note that using the OraQuick kit to test partners is problematic, since it may not accurately detect HIV antibodies until after the three-month window period (Carballo-Diéguez et al, 2012: 1753). Partner testing arises from more than the need for self-protection. Indeed, it is deeply embedded within the ethical conduct that has emerged against the backdrop of biopower and biocapital in the neoliberal era, a conduct which Rose terms ‘somatic ethics’ (2007: 257). HIV testing in its myriad forms entails a particular form of ethics of personhood and the body, one that, as Rose notes: ‘concerns itself with the self-techniques by which human beings should judge and act upon themselves to make themselves better than they are’ (2007: 27). This ethical responsibility, therefore, requires that citizens take up practices not only individually, but in relation to others.
Partner screening for HIV has a complex history of practice, in particular among MSM who engage in casual unprotected sex. In a New Zealand study reported in the late 1980s (Horn and Chetwynd, 1989), one participant described how he would feel under the partner’s arms for swollen lymph glands to assess HIV status. A study conducted in Montreal in the early 1990s described the process of inspection that participants employed to screen partners for HIV status, for example, by looking for Kaposi’s sarcoma lesions and evaluating muscle tone for signs of wasting (Aveline, 1995). Partner screening with over-the-counter rapid HIV tests constitutes a similar form of knowledge production, with the credibility that technoscientific innovations provide. The OraQuick packaging clearly states that one should not use the test ‘to make decisions based on behavior that may put you at risk for HIV’ given the possibility of a false negative. Yet, we misread partner testing if we assume that users believe that these tests are infallible. In testimony to the FDA in reference to the study on MSM described above, the lead researcher noted that when subjects were asked whether they understood that the result might not be accurate given the window period, they all responded in the affirmative. However, as he testified:
They see the possibility of testing partners as something much better than doing ‘ocular’ virology – if I look at you and I think you look good, so probably you’re not infected. They feel much more empowered when they have a test that they can use to test someone. (BPAC, 2012: 148)
Partner testing is not simply an imposition ‘from above’ of a new medical technology as a tool for surveillance, nor is it adopted blindly. As noted previously, the biological citizen is not a passive recipient of health discourse. Clarke et al. (2010: 56) argue that processes of biomedicalization are contingent on how individuals negotiate them, sometimes even transforming them to meet their needs. Hence, some of those who choose to test partners are negotiating the use of a medical technology, and the uncertain knowledge it produces, to fit their own needs and circumstances in order to protect themselves from HIV infection and fulfill a societal obligation. They demonstrate the conviction that biotechnology can provide an objective evaluation instead of relying on visual assessments or the partner’s word.
Those desires and convictions are still framed within contemporary discourses of risk and contribute to the economic bottom line of corporations, however. Drawing from Foucault in her work on the democratic citizen, Cruikshank argues that ‘it is to be in a tangled field of power and knowledge that both enables and constrains the possibilities of citizenship … citizens are made and therefore subject to power even as they become citizens’ (1999: 20). Viewed in this way, performances of biocitizenship, while embodying norms, can also be acts of agency. These acts of biocitizenship have the potential to usher in new forms of subjectivity and ways of becoming intimate. These are biocitizens who, via this performative act, may no longer simply view the body as a potential object of examination by medical authority, but as something to be self-tested at the deepest molecular level. For some, this is part of a life-long process of such examination, as the methods by which biocitizens are able to test themselves and others proliferate. Partner testing has potential implications for the configurations of sexual relationships and practices as biocitizens learn of others’ status in the home and make immediate decisions based on that result. It is from the complex networks of health discourse, corporate marketing, societal obligations, and individual material needs that such practices emerge.
Conclusion
Rose notes that ‘strategies for making up biological citizens “from above” tend to represent the science itself as unproblematic’ (2007: 142). This unproblematic representation is also reflected in marketing and public health discourse surrounding the rapid home HIV test. Yet, as this analysis has shown, scientific technologies are not neutral, and self-testing contributes to the moral and social fabric through which contemporary citizenship practices are woven. The deployment and moral valences associated with this test carry a number of significant implications for biological citizens. First, while it is framed as promoting citizen choice and autonomy, rapid home HIV testing represents ‘symbolic de-medicalization’. That is, it reinforces medicalization by bringing consumers into contact with health authority as early as possible. It is hoped that this will translate into earlier treatment and better outcomes for HIV patients. Second, stratification of access may contradict the reasoning behind releasing the test; in other words, it may be inaccessible to certain populations who, according to public health discourse, need it most. Third, efforts to test the general population, of which the new test is a component, have created a new category of biocitizens: the untested bodies. Stratification of access may further the moral stigma against this population. In addition, the responsibility of health surveillance has been extended to monitoring others. However, this is not merely an example of pervasive biopower; biological citizens construct themselves while negotiating the use of these tests, sometimes in contradiction to their stated use.
As I have demonstrated, the over-the-counter rapid HIV test in the US emerged from a unique assemblage of actors, including government agencies, HIV/AIDS activist groups and non-profits, the biotech industry, and the material needs of a population. Now that the FDA has approved home rapid testing for HIV, other infectious diseases and conditions will likely encounter relatively uncomplicated tracks to approval, limited only by available technology. These tests present a significant shift in the way that citizens are able to understand the conditions of their bodies outside of the clinical setting. In addition, they can potentially improve health outcomes. It is important to recognize, however, that underneath the liberatory rhetoric used to promote these medical technologies, there are important consequences for the way we understand and monitor our own bodies and those of others, as well as for relations of power in society.
Footnotes
Acknowledgements
I would like to thank the faculty and my fellow students at the Institute for the Medical Humanities for comments on earlier presentations of this work, and in particular Professors Rebecca Hester and Arlene Macdonald for their encouragement and feedback throughout the review process. I would also like to thank the anonymous reviewers and editorial board at Body & Society for their close review and critique of previous versions of this article.
