Internet social support groups as moral agents: the ethical dynamics of HIV+ status disclosure
Address for correspondence: David A. Rier, Graduate Program in Medical Sociology, Department of Sociology and Anthropology, Bar-Ilan University, Ramat-Gan 52900, Israel
This paper examines how, on Internet HIV/AIDS support groups, participants discuss the ethics of disclosing HIV seropositivity to partners. The data consist of all mentions of disclosure culled from over 16,000 pages overall of posts from 16 different groups, hosted on seven separate sites. The paper focuses on two main questions. First, apart from providing support and information, did the groups also debate moral dilemmas (and, despite groups’ common perception as ‘safe spaces’ for non-judgmental exchanges, did these discussions include moral judgments and conflicts)? Secondly, did use of this new medium generate a new, alternative ethical discourse, or merely replicate existing discourses? The data demonstrate that online support groups did engage in debating, and trying verbally to enforce, certain views of the ethics of seropositivity disclosure. The most common view advocated full disclosure, though a range of positions existed. Unlike with most online support groups described elsewhere, these discussions often included harshly-expressed moral judgments. The groups did not generate a truly new, alternative discourse, but served as clearinghouses for and transmitters of existing ‘off-line’ discourses, both mainstream and alternative. Implications and limitations of the present study, and areas for further research, are discussed.
Online support groups (Eysenbach et al. 2004) have grown increasingly popular for diseases such as cancer (Seale et al. 2006), lupus (Mendelson 2003), AIDS (Hering 2000), and addictions (Klaw et al. 2000). They offer encouragement, acceptance, and ‘virtual’ companionship to offset social and spatial isolation. Both observers and participants typically describe them as ‘safe spaces’ in which the latter can voice their hopes, fears, and problems without stigma or censure (e.g. Sharf 1997, Hering 2000). The groups supply information on managing the disease, its treatment, and its effects on daily life. This allows them also to be a tool of empowerment (Sharf 1997, Street 2003), even displaying key aspects of a social movement (Radin 2006).
Do online support groups (also referred to as ‘boards’ or ‘lists’) have other functions? Do they deal with the moral dimension of confronting disease? To find out, this paper examines HIV/AIDS boards, focusing on how they discussed the ethics of disclosing HIV seropositivity to sexual partners. This will help answer two main questions about the groups.
First, do participants debate moral dilemmas? And, if so, (as a corollary) do these debates involve moral judgments and confrontations between participants, despite boards’ standard perception as safe spaces? My review of published English-language research on online illness support groups reveals this possibility to have attracted little attention. Moral judgments and personal attacks have been identified in some recovery-oriented lists modelled on Alcoholic's Anonymous’ quasi-religious ‘12-step’ framework (e.g. Denzin 1998). More typical in the literature, however, is Walstrom's (2000) study of an online eating disorder list, in which posters avoided making moral judgments, and collectively employed interactional techniques to preserve both the ‘safety’ of the group, and individual posters’‘face’. What about our case of HIV/AIDS support groups? Referring to traditional face-to-face support groups, Klitzman and Bayer (2003: 174) suggested that the ‘ethos of HIV support groups . . . could preclude . . . confrontations’ over behaviour such as risky sexual activity without disclosure. They presented two examples of individuals who, while condemning the behaviour that fellow support group members described, eschewed confrontation within the group. One of these two did talk to the individual he considered irresponsible, but only privately, after the session (2003: 174). Yet what occurs in traditional face-to-face groups may not predict behaviour on their ‘virtual’ descendant. One reason is that many posters choose to suppress their real name and e-mail address. Anonymity is obviously important on an HIV/AIDS board, since participants often wish to conceal their having AIDS, their seropositivity, or their homosexuality. The anonymity of Internet exchanges can also foster more candid self-presentation (Suler 2004, Bargh et al. 2002). Compared to local, face-to-face support groups, moreover, asynchronous online support groups facilitate discussions amongst a large, diverse, geographically-dispersed group. When discussing so delicate a subject as HIV/AIDS disclosure, online anonymity can lower the threshold for criticising a (nameless, faceless, remote) fellow-poster's position.
Exploring the content of boards’ discussions of HIV disclosure ethics will permit tackling a second main question. Online boards are egalitarian sites, largely free of hierarchical professional/expert influence (see Connery 1997). They also offer the potentially stimulating opportunity to exchange ideas with a large, diverse membership. These are conditions conducive to lay participants’ using the boards to say something new. Do participants generate a discourse distinct from that of wider, ‘mainstream’ society and its traditional authorities? Regarding the present case, the history of AIDS has seen laymen forging new roles vis-à-vis credentialed experts such as scientists and physicians (Epstein 1996). Those living with HIV/AIDS have, on their own, used the Internet to gather information about clinical aspects of the disease (Reeves 2000). They have extended critical discourses about activism (Gillett 2003) and treatment (Rier and Indyk 2006) with roots in pre-Internet grassroots activist newsletters (Indyk and Rier 1993). Does this do-it-yourself approach apply also to handling moral issues?
This paper begins with an overview of HIV seropositivity disclosure. Then, after the Methods section, it presents data harvested from numerous Internet HIV/AIDS support groups to examine whether and how participants debated disclosure ethics. The Discussion explores how these data bear on the research questions posed above, considers their wider significance, reviews methodological limitations of the study, and suggests areas for further research.
The problem of disclosure
For HIV+ individuals, disclosing their seropositivity is often tantamount to admitting behaviours, such as homosexual relations or injection drug use that – though opposition and stigma may have declined with time (Herek et al. 2002) – remain widely stigmatised. Disclosing seropositivity to a sexual partner implies that that partner, too (and that partner's other partners) might be infected. Disclosure may cause rejection, and emotional and even physical abuse (Maman and Medley 2004). Yet disclosure can also bring emotional support, instrumental assistance, and relief at being able to be candid with friends and family (Greene et al. 2003, Klitzman and Bayer 2003). AIDS ‘risk-management’ decisions such as those involving disclosure are often emotionally fraught, placing trust, intimacy, and risk in tension with one another (Rhodes and Cusick 2000). Seropositives carefully weigh whom, when, and how to tell, and often experience disclosure as a process, not an event (Cusick and Rhodes 1999). As we will see below, relationship type and social setting can be significant influences on disclosure decisions.
In public health terms, disclosure enables partners to notify their other partners, and to adopt precautions to avoid transmitting the virus further. Disclosure to seronegative partners can correlate with increased practice of safer sex (DeRosa and Marks 1998). Since the arrival of powerful HAART antiretroviral therapies in the mid-1990s, disclosure can also help infected partners postpone progression to AIDS.
To the extent that seropositives knew their status prior to engaging in sexual relations, in at least 20 US state jurisdictions (American Civil Liberties Union 2004) their failure to disclose could subject them to criminal prosecution. Though actual convictions are not particularly frequent (Bray 2003), the possibility of criminal penalties was mentioned often by participants on the Internet support groups described herein. Yet non-disclosure is common (Ciccarone et al. 2003, Parsons et al. 2005, Wolitski et al. 1998, Stein et al. 1998). According to Ciccarone et al., questions of disclosure ethics thus need to be at the ‘forefront of HIV prevention interventions’ (2003: 953).
Klitzman and Bayer (2003) interviewed 77 individuals about HIV/AIDS disclosure attitudes and practices. Responses ranged from those claiming that they always disclosed to partners, even when taking precautions, to those claiming that they seldom disclosed even when engaging in high-risk activity. Commonly-reported themes in that study (and in others, such as Sheon and Crosby ) included: disclosure associated with feelings of moral responsibility and the desire to preserve trust in relationships; more disclosure to primary than to casual partners; everyone as responsible for their own protection; ‘safer sex’ as a substitute for disclosure; and, in high-risk venues, ‘burn-out’ with safer sex messages combined with mutual presumption of seropositivity resulting in a ‘don't ask/don't tell’ or caveat emptor ethos justifying unprotected relations.
Moral and ideological discourses on practices such as HIV disclosure have shifted with the AIDS epidemic. Tensions between civil liberties and prevention marked its early years, when stigma and discrimination sparked powerful concerns to safeguard privacy (Shilts 1987, Bayer 1989). The discourse of individuals’ responsibility towards partners was often considered hostile moralising and victim-blaming; partly for these reasons, prevention efforts often emphasised self-protection, rather than disclosure (Bayer 1996). By the mid-1990s, however, when AIDS was already evolving from an acute new public health emergency to a somewhat more manageable, better-understood chronic disease, some activists (e.g. Mass 1995, Rotello 1995, Signorile 1995) and researchers (e.g. Danziger 1996, Bayer 1996) were advocating a new focus on individuals’ responsibilities towards others in areas such as disclosure. All this parallels – and may partly reflect – wider trends, in which the ‘new public health’ highlights individual responsibility (Dodds 2002, Petersen 1997, Nettleton 1997). Influential US bodies such as the National Institutes of Health and the Centers for Disease Control (CDC) (Mayer 2004) – which by 1986 had already called for partner disclosure (CDC 1986) – as well as public health researchers (e.g. AIDS Alert 2003, DeRosa and Marks 1998), encourage disclosure as an important element in fighting AIDS.
Yet disclosure's actual value is controversial. When asked, seropositives may mistakenly declare themselves seronegative: their HIV test may have been performed during the post-infection window period when the virus was not easily detectable, or prior to subsequent infection. Clearly, the many seropositives unaware of their status (CDC 2006) are ill-equipped to disclose. Moreover, as the data below indicate, seropositives may knowingly deny their status when asked. Also, though those who consistently disclose may engage in fewer high-risk activities, this relationship is complex (Parsons et al. 2005). If both partners are HIV+, for example, disclosure can be used to justify unprotected relations, despite risk of reinfection or other sexually-transmitted diseases (STDs) (Simoni and Pantalone 2004, Sheon and Crosby 2004, Serovich and Mosack 2003). Some thus conclude that disclosure should not be the centrepiece of prevention messages (Simoni and Pantalone 2004, Sheon and Crosby 2004). Instead, many AIDS service organisations (ASOs) (Adam 2005, Duffin 2004) and others (e.g. Frascino 2005) still hold that each partner (regardless of serostatus) is responsible for practising risk-reduction. Also, given the potential for violence or criminal prosecution, some hesitate to press vulnerable individuals to disclose (Collins et al. 2000).
As stated above, this paper examines whether online support groups debate the ethics of seropositivity disclosure and, if so, the extent to which these debates reflect – or depart from – the (offline) approaches towards disclosure just outlined.
This study employed unobtrusive examination of archived posts on numerous HIV/AIDS Internet support groups. To avoid both unnecessary intrusions to participants as they confronted daily life with HIV/AIDS, and potential perturbations in the natural flow of group discussions resulting from the investigator's visibility, I never posted, nor did I ever contact posters. Instead, I scanned the contents of group discussions for all threads (i.e. linked posts generally including an initial query and responses thereto) discussing disclosure. I assessed the overall direction (i.e. the position advocated) and tone (e.g.: friendly, stern, matter-of-fact) of such threads, and coded constituent posts, using an inductive, grounded theory approach (Glaser and Strauss 1967), for major patterns and themes emerging from the data. Data-gathering continued until the point of analytic saturation, when additional data ceased yielding new categories and insights.
For many of the boards studied, archives were open to anyone with Internet access. On others, archives were accessible only to members. While gaining membership was sometimes automatic, certain boards required submission of a statement explaining one's purpose for joining. When I wrote to moderators explaining I was a sociologist studying Internet support groups, I was usually granted membership, with access to the archives. Moderators of two boards, however, never responded, preventing me from including their boards.
Across all boards, disclosure was mentioned in only a small fraction of total posts. This mandated coverage of multiple boards, to generate enough material for analysis. The primary data set included 16 lists hosted on seven different Internet sites. Basic criteria for choosing sites were that they be accessible to all users and free of charge. Sites included: major general-interest Internet portals; health/medical sites aimed at the general public; and those aimed at the gay community or at individuals interested specifically in HIV/AIDS.
Within Internet sites hosting multiple HIV/AIDS lists, purposive sampling criteria favoured those groups: whose members were likelier to have faced disclosure issues (i.e. included sufficient HIV+ participants); had higher, more active participation and viewing rates (as recorded by online ‘site meters’); and contributed to an overall diversity amongst the sample. Most sites had moderators, serving mainly to screen obscene posts and curtail or ban so-called ‘AIDS dissidents/denialists’ (who often annoyed other posters with their declarations rejecting the link between HIV and AIDS, and their calls to stop practising safer sex or taking AIDS medication.) ‘Ask the expert’-type sites were excluded as unsuited to the focus on support groups.
The different lists began at various points. In most cases, the lists were examined from the beginning of archived posts until the close of data collection in the autumn of 2004. Most data come from the period 2000–2004, though some posts date from as early as 1997. In a couple of instances, the immense traffic and unfavourable signal-to-noise ratio (i.e. the high percentage of posts not directly related to HIV/AIDS support) made total coverage impractical; in each case, however, the ‘partial’ coverage included a period of about four years. In addition, ‘non-covered’ time periods were spot-sampled to rule out significant shifts in the discussions of topics central to this study. Finally, a search of relevant keywords was performed on a major Internet search engine to yield posts on HIV disclosure from online support groups lying outside the primary sample frame.
For most boards, all posts (whether mentioning disclosure or not) were downloaded for review and storage. However, signal-to-noise considerations sometimes dictated more selective downloading. Still, the total set of all downloaded material from all boards examined comes to about 16,000 pages (although this number is partially inflated by the graphical frames within which text was often wrapped).
The rapidly-evolving field of Internet research challenges interpretations of traditional ethical codes (Eysenbach and Till 2001). For example, analysis of archived (i.e. pre-existing) Internet posts stored in legally, openly accessible formats is not really human subjects research (Walther 2002, Robinson 2001). As noted, the present study involved non-intrusive examination of archives that were either freely available to the public or to which I easily secured access, without subterfuge, from moderators who presumably represented members’ interests.
The design would thus seem unproblematic. Ethical guidelines for sociological (American Sociological Association 1999: 11.02[c]) and Internet (Ess and the AoIR Ethics Working Committee 2002) research essentially consider public venues as unprotected by confidentiality. Robinson's (2001) discussion of ‘unsolicited narratives’ from the Internet compared posting on freely accessible lists to posting on a cork bulletin board in a public space, concluding that such users ‘expect that persons unknown to them may read, share, and comment on their postings’ (2001: 711).
Yet the Internet can blur traditional definitions of public and private (Eysenbach and Till 2001, Frankel and Siang 1999). For example, posters may not fully grasp that their posts are being archived for long-term viewing by the wider public. Participants may come, despite objective awareness to the contrary, psychologically to regard their list as a private safe space, and disclose more than they might otherwise. These concerns, coupled with the sensitivity of the topics examined, dictated several measures to protect group participants.
First, in the data presented below, all posts have been stripped of their: poster name (or alias); e-mail address; date; the list from which they were retrieved; and any content specific enough to risk identifying posters or their associates. As an added precaution, I have adopted Sixsmith and Murray's (2001) suggestion not to quote verbatim from boards whose archives are closed to non-members (although conclusions in the present paper are based also on material contained in the closed-archive lists to which moderators granted me members’ access). Since this, however, as they note, can ‘impoverish’ (2001: 128) the data, I do present below verbatim quotes of representative posts from boards whose archives are completely open to the public. As a final precaution, following King (1996) and Sixsmith and Murray (2001), even the names of online support groups studied, and their Internet hosting sites, have been concealed.
Before describing how the groups handled disclosure, some background information is useful. In general, only a fraction of viewers actually posted; most mainly ‘lurked’ in the background. Yet those who did post could, on many lists examined for this study, attract hundreds (sometimes, thousands) of viewers. Though most posts seem to have originated in North America, others came from around the globe. While the mix and tone of discussion varied across boards, the primary component of group discourse was indeed support. Posters would write about their hopes, fears, loss. Posts often dealt with practical questions about symptoms, treatment, and social services. Certain lists saw frequent posts from AIDS dissidents/denialists. These were typically treated as major disruptions, with moderators often trying to identify and eject their authors, whom they saw as attempting to distract posters from real threats of HIV transmission.
This section presents posts representing dominant themes from online discussions of partner disclosure. The posts are generally discussed in the context of grouped threads. This highlights the interactive dynamics of the boards, and preserves the authentic mix of opinion amongst the participants (at the expense of thematic tidiness). Original spelling and punctuation have been retained and, unless otherwise noted, signs of emphasis such as capitalisation are as originally written. Ellipses indicate editing for brevity (unless noted otherwise). Finally, initial posts in a given thread are italicised.
Thematic categories ranged between the two poles of full disclosure always and outright lying (even involving high-risk behaviour).
The Golden Rule
In Western society, the roots of the Golden Rule reach back at least to the Biblical injunction, ‘love thy neighbour as thyself’[Leviticus 19: 18]. Indeed, posters’ most common position regarding disclosure ethics was full disclosure. Often, this was expressed in terms of the dicta: ‘do unto others’ and ‘honesty is the best policy’.
One typical thread began as follows:
i need some help. I am 27 female hiv+ . . . i just met someone a few weeks ago . . .we've been having protected sex (ALWAYS protected . . . .) he doesn't know my status yet. do I need to tell him if we keep it safe? It's so hard and so terrible to imagine losing him already . . . [ellipses in original] help with any advice. Please!!!
This request received six replies. Each counselled disclosure, generally emphasising factors such as candour in relationships and/or the Golden Rule. Most respondents directly, forcefully commented on the moral issues involved:
. . . just turn the tables . . . at what point would you just explode? [D]o unto others. . . .
Another response warned that the law forbade HIV+ individuals to endanger others via unprotected sexual relations. One poster mentioned that his policy of disclosing prior to relations had cost him half his ‘potential sex partners.’
On another board, an HIV+ poster asked:
I met a guy over the weekend. . . . I didn't tell him about my status although we did have safe sex. . . . Should I have told him before anything sexual happened?
Five responses (the sixth reported having abandoned disclosure as too risky) advocated disclosure. For example:
I was taught that honesty is the best policy; you should have been up front with your status.
Women often framed disclosure as vital for a healthy relationship – and as a test of commitment:
MY BOYFRIEND HAS JUST ASKED ME TO MARRY HIM I LOVE HIM VERY MUCH AND WANT 2 SAY YES BUT HE DOESN'T KNOW IM POSITIVE AND I CANT BRING MYSELF 2 TELL HIM 4 FEAR OF LOSING HIM ANY SUGGESTIONS?
Responses to this post typically counselled honesty, and emphasised its value to relationships:
Sorry if this sounds too much like a lecture, but, ultimately, it's going to be easier to . . . start off the marriage with honesty. . . .
Another thread began as follows:
I am a 29yr old hiv+ female. . . . Recently I have been feeling guilty. I have been seeing this guy for the last 3 months. He is unaware of my status. We have had sex on numerous occasions. Most were protected, but one time wasn't, and there were 2 occasions where the condoms slipped off. I feel the need to tell him. . . . But how? I am actually appalled at myself for letting the relationship continue, but at the same time, I'm falling in love with him. HOW DO I TELL HIM??? WILL HE HATE ME? WILL HE EVER TALK TO ME AGAIN? WILL HE TELL ALL OF OUR OTHER FRIENDS?
Three responses advocated honesty (two of these also recommended discreet ways to disclose; one also stated that her partner bore some responsibility for precautions). Another woman mentioned that, while she tried not to disclose due to fear of violence or of being ‘outed’, she has had to argue with men who rejected her suggestion to use condoms. Still another woman declared that she felt guilty about not disclosing to her boyfriend of one year. At this point, two posters bitterly attacked such non-disclosure. One wrote:
ok so you had unprotected sex with the man you ‘love’ knowing you could have infected him . . . [ellipses in original] and now ur looking for love and support from us and from him? If you can tell me you really beleive you DESERVE love right now . . . [ellipses in original] I’ll send you . . . heart shaped chocolates for every day of ur self absorbed life. . . . Jesus lady, grow up, invest in some morals. . . .
Indeed, a significant minority of online discussions of disclosure (particularly those involving unprotected sex) included language much harsher than normally reported for support groups. On Internet groups, writing in very sharp tones is ‘flaming’.
The significance of these frequent calls for disclosure is examined in the Discussion. Note, however, that posters were mainly preaching virtue to others, not reporting their own actual practices.
Safer sex and non-disclosure
Golden Rule sentiment was far from universal. One major (though partial) exception involved acts considered to constitute ‘safer sex’ (i.e. those acts minimising the risky exchange of body fluids).
I know it's generally not talked about. But as a newly positive man I was wondering at what point in a relationship do you reveal your status. I'm thinking that if it's a no-risk, low risk sexual relationship . . . there's no reason to disclose.
His position found supporters, who also added that the depth of disclosure varied with depth of commitment to the relationship:
I agree. No risk for HIV . . . gets no disclosure . . . but for real relationships, within two dates. For risky sex immediately.
Despite the prevalence of this attitude, it also drew strong criticism, such as from this poster on another board:
There is also the problem of ‘moral relativism’ in our community. I was made aware of this on an HIV list. . . . It seems to be OK to have safe sex with someone without telling them that you are poz [HIV+]. Even though there is always a possibility of transmitting the virus anyway. I find this . . . incomprehensible . . . but most of the gay community goes along with this lie.
As the following section demonstrates, posters sometimes justified non-disclosure even for riskier activities.
It takes two to tango: Caveat emptor and don't ask/don't tell
Many posts, while advocating honesty, suggested that the uninformed partner, in an era of high STD prevalence, also bore some responsibility:
I'm an HIV+ woman, over the summer i had a fling with a man not knowing his HIV status but i assumed he was negative. We used protection many times and several times we used nothing. . . . Should I tell him that i'm HIV+ because my guilt is eating at me . . . or should i simply remain silent? Pls, i need friendly advice and not critism.
One response stated: ‘it's also his responsibility. If in today's day and age he is still taking the chance and having unprotected sex then he realized he's taking a risk. . . .’ This position was controversial. On another board, a nearly-identical statement prompted a comment that seropositives who transmit the virus without first disclosing it to their partners deserve to be killed.
Still, like others (Sheon and Crosby 2004: 2111, AIDS Alert 2003), Klitzman and Bayer (2003: 59) noted that non-disclosure could become a:
collective, mutually reinforced norm, with many engaging in an implicit policy of ‘don't ask, don't tell’. In fact, at baths and sex clubs, anonymity and the absence of conversation defined the milieu.
The present data confirm the existence of such a norm (at least in certain contexts). Numerous posters agreed with this remark:
Isn't there a buyer beware [expectation] when you are having casual sex – I mean isn't everyone assumed to be positive or at least possibly dangerous cause they are out there and having sex freely and without worry?
One thread opened as follows:
recently infected. . . . Lost my nerve, not my looks. So I just stay away from possible encounters. Getting tired of that. How do you break the news. OR do you?
Tell/Don't tell? . . . I live in San Francisco. The Stats tell us that some monumentally high number of men in the city are positive. This truth, coupled with the fact that the majority of the encounters I have are of the ‘one-night-stand’ variety have erased any need for such conversations from the list of details that I disclose. . . . I can't remember the last time anybody asked. . . . there are a whole lot of men who just don't want to talk about it. Do they want to contract HIV? No, I don't think so – they just don't want to talk about it. And you know what – neither do I.
Thank you for a frank posting! I live in New York and agree totally with you. Don't Ask, Don't Tell is everyone's motto.
Another response (perhaps from a denialist) went further, advocating complete non-disclosure: ‘Don't tell anyone!! Forget the label and live life without fear and anxiety’. A subsequent poster, however, derided so extreme a position:
OK [censored], don't tell anyone, ever? I guess then people who have genital warts should also not tell How about people who have a non HIV, STD. Should they tell? Oh don't mind the crabs, I didn't want to tell you because I might be labeled. Well I have a label for you. ‘[censored] irresponsible’.
Despite such attacks, many posters stated that, in some settings, non-disclosure is indeed mutually expected, constituting a counter-norm. Posters sometimes cited this counter-norm to justify non-disclosure. Partly, this was an ethic of mutual (or universal) responsibility. As some posters remarked, ‘it takes two to tango’. But this also contained a substantial pragmatic element, since – as the following section demonstrates – one could never be sure that a partner is being truthful.
Regarding the case of seropositives lying in response to direct inquiries about their status, most posters strongly opposed such active deceit. In a post headed, ‘oops, I lied, now what do I say’, one poster wrote:
In the heat of sex, I was asked if I was ‘clean.’ I said yes (lie). . . . Now I still see the guy, how do I back peddle?
Amongst the 10 responses, six advocated disclosure. As one wrote,
honesty is the best policy. If more people were honest there would be less infections.
Another poster, though, recounted his experience of disclosing to two partners after engaging in unprotected, low-risk sex: they subsequently pressed felony charges against him. Two posters questioned the semantic implications of the term ‘clean’.
Yet another harshly attacked the original poster:
Oops??? Ooops, I accidently said I didn't have a fatal illness when you asked me?! There is no excuse for being dishonest about that. You may have cost someone their life. Anyone who defends that kind of action is basically saying it's okay to spread AIDS. I hope for that poor guy he didn't get it, and in the future think of others suffering before your sexual gratification.
In a separate post, conversely, one seropositive male mocked reliance on asking partners about their status prior to sexual activity for, as he candidly explained, he himself lied in response to such questions:
Are you nuts? Do you think there is any value in asking a total stranger his HIV status?? The response is always, ‘What answer gets me [sex]?’ . . . I'm positive, and when guys ask me ‘Are you healthy’ or ‘Are you clean?’ I always say yes, because I'm horny and want sex!
In fact, according to an informant of Klitzman and Bayer (2003: 59), patrons of venues such as bath-houses do not expect candour: ‘I think most people realise that no one's going to necessarily be honest. I mean, with these people you don't even necessarily know their name’. However, in the present data, admissions of outright lying, as opposed to concealment or prevarication, generally attracted flames. This was particularly so when involving riskier activity.
Two conclusions are immediately clear from these data. First, online support groups, in addition to their emotional support and information functions, are also an arena for debating moral dilemmas in living with HIV/AIDS. Though this might broadly be construed as a form of support, we will see below that it is something more, as well. Secondly, these debates feature sharp moral judgments and flames. This indicates the need to qualify groups’ widespread image as supportive safe spaces. But, what of the second main research question, whether boards realise their potential to generate an original, alternative discourse? Addressing this question is not straightforward, as it presumes some baseline measure of existing offline discourse, which is difficult to specify here. However, Klitzman and Bayer's (2003) face-to-face interviews constitute one proxy for popular (non-expert) discourse. Their overall response patterns (as do those of other studies cited above) track well with the present data. Moreover, the range of existing (offline) expert opinions on disclosure, cited earlier, encompasses most of the positions found in the present data. This finding parallels that of Gillett's (2003) study of individuals’ HIV/AIDS web sites. Those sites, while constituting ‘alternative public spheres’ (2003: 610) conducive to activist discourses that challenge institutional discourses, mostly replicated discourses already found offline, with the partial exception of AIDS dissidence (see also Hering 2000). More generally, the present data confirm other Internet research (Nettleton et al. 2005, Seale 2005) that this new medium does not guarantee a new message.
Why is this so, in the present case? One clue is that, not only did posters usually advocate disclosure (those that didn't are discussed below), but they frequently did so using time-honoured adages such as, ‘honesty is the best policy’ and ‘do unto others’. This seems to reflect enduring influence of basic moral socialisation agents such as family, school, and church: ‘lessons learned at mother's knee’. Perhaps the weight of this socialisation prevented most posters from departing from dominant disclosure discourses. Prevalence of calls for disclosure in the present data suggests posters have largely internalised the experts’ authoritative (though not – as seen above – monolithic) prevention discourse of responsibility, as well as the basic social contract. These influences are reinforced by more direct regulatory practices, such as criminalisation of non-disclosure.
Adam (2005: 334) has suggested that ASOs, in striving for ‘community self-governance’, functioned as ‘agents of “responsibilisation”’. The present data suggest that online support groups for HIV/AIDS function similarly. Just as online breast cancer list members ‘police’ accuracy of posts (Esquivel et al. 2006), posters to AIDS lists police online discourse to mark and attack positions they deem immoral and dangerous. Moreover, data not presented here indicate that online discussions caused some posters to retreat from their initial refusals to disclose, to a position of at least declared willingness to disclose. Individually and collectively, posters thus function as moral agents by attempting to influence fellow list-members to exercise ‘responsibility’ by disclosing their seropositivity.
It is difficult to assess the extent of resistance to calls for disclosure. Flaming against those advocating non-disclosure probably induced some list members to refrain from expressing their own non-disclosure attitudes. Nevertheless, the data did contain much debate, with significant departures from the dominant Golden Rule theme. Consider the caveat emptor norm described above. This represents a discourse genuinely alternative to that of mainstream authorities (though, as studies cited above show, not one original to online boards). True, some earlier-cited health experts held that, given the limitations of disclosure, it was safer for each party to see to his/her own personal safety rather than relying on partners to disclose. However, they surely never recommended a priori a situation wherein each party waives basic precautions by engaging in unprotected, high-risk activities. Another, stronger exception would be posts by seropositives admitting they'd lied about being HIV+ when asked, and reporting this to be common behaviour in their circles. Originating from street-level practice rather than mainstream/expert discourses, these posts also represent a form of alternative (though not new) discourse. But is such non-disclosure practised truly as resistance, or simply as the easier alternative to disclosure? The data contained relatively few mentions of explicit, conscious resistance to dominant disclosure discourses, suggesting the latter explanation as the better fit. One exception involved several posters who explicitly resisted the conventional view that seropositives bore special responsibilities towards seronegatives, claiming instead that seronegatives must recognise the risks and protect themselves. The clearest example of resistance was AIDS denialism, which explicitly rejected basic frames and discourses of both biomedical and public health expertise (though even this mainly repeated pre-existing offline discourses).
If the overall predominance of Golden Rule discourse suggests limits to the prevalence of new or alternative discourse, such evidence of alternative discourse as just described poses questions of its consequences. In Pitts’ (2004) discussion of women's personal breast cancer websites, she noted that, rather than producing a true alternative, liberating discourse, they often seemed to reflect (from her apparently ‘critical feminist’[2004: 39,48] stance) a troubling replication of dangerous establishment notions of personal responsibility for one's illness and its management, and the ‘nearly hegemonic legitimacy and credibility’ of the language of biomedicine (2004: 53). Similarly, Fox et al. (2005a) studied an Internet support group for those using a weight-loss drug. They found that, though the group helped create ‘expert patients’, it failed to promote resistance to the dominant biomedical discourse. The present study stands in interesting counterpoint to those studies. Here, the more alternative discourses seem the more troubling, at least from the practical perspective of preventing AIDS. Regarding disclosure ethics, an individual's ‘liberation’ (from, say, conventional notions of responsibility) can jeopardise others’ lives. In a related vein, a ‘pro-anorexia’ Internet support group resists biomedical framing of recovery as a goal, and emphasises ‘“[t]hinspiration” . . . encouragement to sustain low weights in the face of social pressure’ (Fox et al. 2005b: 960). Haraway's (1991: 191) caution against privileging alternative scientific discourses may apply to other discourses as well.
And this suggests another interpretation of why most posters said little new about disclosure ethics: need they? Perhaps, rather than posters being subject to a socialised incapacity to challenge dominant moral discourse, they functioned more as autonomous, aware moral agents who – considering the alternatives – simply regarded that discourse as adequate (at least concerning disclosure). Moreover, participants apparently came to these boards seeking, not activism and resistance, but emotional support, shelter from isolation and stigma, and practical advice. These functions do not necessarily dictate rejection of existing moral frameworks.
If these boards are seldom generators of genuinely new moral discourse, they do seem clearinghouses for and transmitters of existing alternative discourses. Debates over disclosure ethics were witnessed not only by active posters, but also those merely lurking on the boards. It is likely that the very exposure to debate over competing models challenged many list members, and influenced their own attitudes (or even practices) regarding disclosure. This could be particularly important for lurkers, who constituted a ‘silent majority’ of most lists. Lurkers may come to the groups less politically and ideologically committed than do active posters. If so, the boards might be one of their only channels of AIDS information. The boards expose them to a smorgasbord of opinions and experiences, including some far removed from their own worlds and from mainstream media and other discourses. For them, active posters might serve as especially influential models and opinion-shapers. And, following Granovetter's (1973) classic observation of the strength of weak ties (in which the richest contacts are potentially those furthest from one's more familiar social networks), the greatest potential influence could come from voices least likely otherwise to reach less-engaged lurkers. In this case, that could be the AIDS denialists, or those describing their experiences with caveat emptor mores.
This helps explain the relatively severe (occasionally, vicious) responses to such posts. For, as responders police the boundaries of acceptable discourse by arguing with specific posters, they also play to the gallery, to prevent ‘dangerous’ or ‘irresponsible’ posts from swaying the attitudes and ultimately behaviour of lurkers and other uncommitted members of the audience. As one poster explained about his responses to denialists’ posts, ‘The only reason I reply is that I worry that some poor person will stumble upon them and [think] they make sense . . .’
One limitation of the present research is that, since online posters can fabricate not just stories but their entire identity (Turkle 1995, Wallace 2001), it is impossible to verify that posters even remotely match their online personae. Apart from questions of fabrication, posts were often simply oblique to posters’ age, race, sexual orientation, and even sex. Another limitation involves intentionality. Because this study relied strictly on observation of archival data, rather than on interviewing posters, it cannot probe interpretations and meanings behind what they posted online, to reveal, for example, what projects of impression management or identity reconstruction might have shaped their posts (see Turkle 1995, Wallace 2001). We know only what they chose to post, and cannot be sure what they actually believed (much less did, offline). This is the methodological trade-off for the advantages, discussed above, of the unobtrusive design. However, that this study was conducted to explore how the boards discussed disclosure – and not to make inferences to the distribution of actual offline attitudes and practices – somewhat mitigates the damage.
The extent to which these data may be generalised to other kinds of boards remains to be seen. HIV/AIDS is an especially politicised condition, and seropositivity disclosure to sexual partners is a topic of the utmost sensitivity. Are moral debates and judgments common in other situations? Of course, disclosure is not relevant only to HIV/AIDS. For example, Sharf's (1997: 71) analysis of posts on an electronic breast cancer support list demonstrated that single women having undergone mastectomies face the issue of disclosing this fact to their dates. Further studies might examine how boards for genetic diseases discuss the ethics of disclosing genetic risk (say, to potential spouses). Test cases might also involve, not only disclosure, but other moral questions, such as those surrounding end-of-life decisions and foetal testing. Meanwhile, an additional analysis of the present data set, already in preparation, will more closely examine how posters discuss concepts of blame and responsibility (not necessarily involving disclosure).
Further studies might employ more direct methods such as surveys (online or otherwise) or semi-structured interviews to determine how online discussions affect posters and lurking spectators.
To conclude, Bunton (1997: 231) has observed that nowadays, ‘the sites of health regimes . . . are likely to be more dispersed’ than ‘expert discourses’. To an extent, online support groups (at least for HIV/AIDS) constitute one such site. The boards described herein are sites of, by, and for people living with HIV/AIDS, distinct from government, profession, and other traditional sources of authority. They are a mechanism not only for exchanging support and information, but also for collectively debating real-life moral dilemmas, and engaging in moral suasion and (verbal) attempts to enforce what posters defined as ethical conduct. These boards seldom realised their potential to generate new, alternative disclosure discourses (and where they did, this seems problematic). Instead, they functioned as clearinghouses for and transmitters of existing discourses, both mainstream and alternative.
Clearly, there's more to support groups than just support.
The author gratefully acknowledges: Shirly (Hering) Bar-Lev for their many discussions; Ron Bayer, Miles Little, Efrat Tillinger, and two anonymous referees, for valuable comments on earlier drafts; and Orly Benjamin and Nick J. Fox, for helpful advice.